NDIA Accountability Project

Impact of NDIS planning on participants' experiences and outcomes: A research perspective

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Submission to the Joint Standing Committee on the NDIS

September 2019

Dr Sue Olney, Research Fellow, Public Service Research Group, UNSW Canberra

About us

The Public Service Research Group at UNSW Canberra1 has a longstanding commitment to researching public service markets and personalised care systems in Australia and overseas. We welcome the opportunity to contribute to the Committee’s inquiry into NDIS planning.

Professor Helen Dickinson2 and Dr Sue Olney3 have researched various aspects of the NDIS, including participants’ experiences of the scheme during its trial phase in the study Choice, control and the NDIS.4 A key feature of that study was the participatory and multidisciplinary research method applied to gathering, analysing and presenting data on service users’ perspectives of having choice and control in the NDIS,5 which provided unique insight into the scheme’s planning process from the participants’ angle. The findings of that study, together with other relevant research6, underpin this submission.

1 https://www.unsw.adfa.edu.au/public-service-research-group/ 2 https://research.unsw.edu.au/people/professor-helen-dickinson 3 https://research.unsw.edu.au/people/dr-sue-olney 4 Warr D, Dickinson H, Olney S, Karanikolas A, Peters D, Katsikis G, Wheeler J, Ozge J, Hargrave J, Wilcox M & Kasidis V (2017) Choice, Control and the NDIS: Service Users’ Perspectives on Having Choice and Control in the New National Disability Insurance Scheme. Melbourne: University of Melbourne http://socialequity.unimelb.edu.au/__data/assets/pdf_file/0010/2364499/Choice-Control-and-the-NDIS- Report-Melbourne-Social-Equity-Institute.pdf 5 http://socialequity.unimelb.edu.au/news/news-archive/NDIS-research-presented-to-MPs 6 Olney S & Dickinson H (2019) ‘Implementing the Australian National Disability Insurance Scheme: implyations for policy and practice’, Policy Design and Practice https://www.tandfonline.com/doi/full/10.1080/25741292.2019.1586083; Devine A; Dickinson H; Brophy L; Kavanagh A; Vaughan C, 2019, ‘‘I don’t think they trust the choices I will make’ – Narrative analysis of choice and control for people with psychosocial disability within reform of the Australian Disability Employment Services program’, Public Management Review, hhttp://dx.doi.org/10.1080/14719037.2019.1648700; Data Governance and the NDIS https://www.disabilityinnovation.unsw.edu.au/research/data-governance-and-ndis

Submission summary and recommendations

Although many participants report that they are satisfied with the NDIS, 7 adverse experiences of the scheme’s planning process are well-documented. 8 It is reasonable to expect problems in the early stages of a reform of the magnitude of the NDIS rolled out in a tight timeframe, and changes have already been made in response to issues identified in participant pathways into and through the scheme. 9 However, research suggests there is still a gap between participants’ expectations and experiences of the NDIS planning process, and unequal outcomes based on participants’ capacity to navigate the planning process. 10 Both issues have flow-on social and economic costs.

Our submission addresses the following terms of reference for the Committee:

  • the experience, expertise and qualifications of planners;
  • the ability of planners to understand and address complex needs;
  • the adequacy of the planning process for rural and regional participants

Our recommendations:

1.   Planners should have a strong commitment to working respectfully with people with disabilities and their families and carers, and capacity to understand their diverse goals, needs and circumstances.
2.   Planners should be equipped to understand the local service environment and developments in the field of disability care and support.
3.   Assessment of what is reasonable and necessary to fund from participants’ preferences raised in the planning process should be transparent, clearly explained and well-documented.

4. Planners should ensure participants know how and where to access services and support included in their NDIS plans.

The experience, expertise and qualifications of planners

In our study of Choice, control and the NDIS,$^{11}$ participants described lack of clarity in the planning process, particularly in relation to planners’ assessment of what was ‘reasonable and necessary support’ for them. Many said that planners making decisions about their funding lacked understanding of their disability and failed to consider their preferences. Examples include:

Our first case worker had never done work with disabilities before. Had no knowledge of what could be given, what was required – a person with a disability required. She did not last long.$^{12}$

 I brought in hospital files, the whole medical background, very organised, different files for different things, and at the end of the interview this planner said, “Has anyone ever suggested [a different diagnosis]?” … you feel like you have been talking to a brick wall. There were quite a lot of problems that went on and I thought is this a personal thing between me and the planner or is this actually that this planner has just not got a clue?$^{13}$

When they were giving me another planner, I said, ‘I want to know whether this planner has any understanding of [$my specific disability].’ They said $I wasn’t allowed to ask that question.$^{14}$

My first experience with NDIS, I had a planner who didn’t listen to me. Still to this day, on the plan there is something in there for [$my teenage son$] to play [$a particular sport$]. [$My son$] doesn’t play sport. [$The planner$] seemed to have it in his head that he needs to play sport… I just thought, well, there were some things that he did that were good, but what I found was the most difficult part was not having someone setting it up for me. They organised this wonderful plan with all this funding and it was going unused because I didn’t know where to start.$^{15}$

In the first planning phase we probably knew more than the planners did. That was our experience. Things like when I said, “You’ll have to put something in her plan to cover her transport because she’ll use the mobility allowance,” they looked at me like I was an idiot and said, “No, she won’t.” I said, “Yes, I believe she will.” Then they had to get back to me later on and say, “You were right. We didn’t know that.” There’s a lot of things that the planners initially didn’t really know.$^{16}$

…when we go into a plan, we do a lot of preparation with our therapists. Hours and hours of talking about what do we need for the next $12 months$, what are we going to forecast, what shall we ask for in terms of therapy hours and time. They do a lot of research at their end, give you a plan… [Our planner said] “I felt that the goals the therapist were working towards overlapped, so I felt that you did not need that many hours with your therapist.’ That was it. She moved to another job. So, I could not get any more information. I said, I would really like to know how you have worked it out. What is the frequency of therapy? What are the goals you felt overlapped? How am I going to make this budget work for [$my preschool aged son$]? I just need more information. But there was no information to be given.$^{17}$

The ability of planners to understand and address complex needs

Participants’ stories of difficulties they experience in the planning process highlight the ways in which factors that drive inequities in general - such as age, gender, health, ethnicity, education, socioeconomic status, residential location, and household structure – become fault lines in NDIS plans.

The operational boundaries of the NDIS are still blurred despite principles to determine the responsibilities of the NDIS and other service systems having been agreed by COAG. Clarifying ‘who supplies what’ to people with disabilities in mainstream services like health and education, or what is a ‘primary disability’ for participants with co-morbid conditions, are lingering challenges for the NDIS and Australian governments more broadly. These should not be categorised as ‘complex’ needs - they are simply individual needs. This is what the NDIS was designed to address.

Local area coordinators should be equipped to understand the diverse needs and preferences of people with disabilities, and to understand and be able to explain the service system to those who rely on it.

The adequacy of the planning process for rural and regional participants

Many participants in the Choice, control and the NDS study said they were unable to access services approved in their plan, a finding consistent with the NDIS budget underspend.24 This was a significant issue in negotiating annual plans, where participants cited examples of requests for funding being denied on the basis that funds previously allocated for similar items had not been spent. Underutilisation of agreed services, equipment and support was prevalent in rural and regional areas.

In some rural locations, access to disability support has been complicated and sometimes made more expensive by reforms to other community services, which limit local providers’ capacity to pass economies of scale on to service users. These locations are highly susceptible to market failure, a risk flagged in the initial Productivity Commission report recommending the creation of the NDIS. If the aim of the NDIS is to give people with disabilities more control over their care and support through choice and competition, the planning process must acknowledge that not all individuals have access to robust or functioning markets in which to exercise this control.