Information & Advocacy: The Lifeblood of a Functioning National Disability Insurance Scheme

By Darren O’Donovan

The notion of choice – the ability to choose and plan the delivery of your supports is fundamental to the National Disability Insurance Scheme. The central goal upon its creation was a shift from the rationed, top down delivery of services towards a bottom up user driven selection of funded supports. In effect, the National Disability Insurance Scheme Act is an attempt to harness market logic – where consumer power is unlocked through individualised funding, within a larger market “stewarded” by the National Disability Insurance Agency. And of all economic underpinnings and institutional pre-requisities of NDIS: from a sustainable workforce, competition, choice, responsiveness, supply side interventions, one stands out for its need to be emphasised: information.

Information as Market Power

The idea of individualised funding is not new, many jurisdictions have championed the idea of public service markets. What has been confirmed about these schemes is however, the fact that choice does not manifest itself without the underlying structures and relations in which it can flourish. Securing and using any individualised plan often involves families taking on the burden of identifying and bridging to service providers.  The idea of information asymmetry – where some market participants have greater access to information than others, represents a powerful threat to the vision of the NDIS as an equitable, nationwide scheme.

The key event setting the table for the NDIS lies at its very edge: the process of diagnosis. Equitable access to prompt, accurate diagnosis which translates into clear statements about the persons daily functioning and the benefits of supports is the gateway to a functioning scheme. Its complexities were simply could not mapped by the initial Productivity Commission reports. Recent reports have highlighted the potential twelve month delay in securing a diagnosis in parts of Sydney. There is little new about this, the postcode being the most determinant of so many outcomes in Australia, the database entry of class distinction. In 2016, participation of people from a non-english speaking background also lagged, prompting new policy interventions. Each condition will have its own informational challenges – the condition of fetal alcohol syndrome disorder for instance – manifests in subtle ways, and a mere clinical framing may not window or link effectively into the impact assessment of how a condition impacts everyday individual functioning.

The overarching rhetoric of cost blowout has damaged the scheme’s information strategy in key ways – the process of generating an NDIS plan itself often rides on a relatively limited set of interactions between clients and staff. While those with resources will be able to prepare for these interactions, vulnerable or marginalised groups – for instance those with cognitive disability – may struggle to flag relevant issues and provide the narrative necessary to trigger support. Crucially, these people must request that additional information is sought from other sources such as community groups who they are in contact with. They must also be aware of the potential for requesting support co-ordination in their plan. This is where the Agency determines that an individual requires one of three tiers of advocacy support: support connection, mid-range support co-ordination or the most intensive, specialist support coordination. More generally, the NDIS has created the role of Local Area Co-ordinators to map and engage the NDIS population. The sheer breadth of the job description of this role, together with the natural focus upon transitioning groups into the scheme, may mean, however, that most complex and individualised access to justice issues are obscured by the realities of organisational triage and priority setting.

The NDIS: A Complex Network of Variable Services and Shifting Pressures

As a teacher of administrative law, clearly I am accustomed to dealing with a morass of bureaucratic documents and difficult statutory criteria. I am nevertheless of the view that NDIS decision-making represents a particularly complex, difficult to map process of discretion. Each decision regarding a reasonable and necessary support requires an individualised working through of criteria drawing from expert evidence relating to possible benefits. In short, each request for a support must pass through the following steps (many of which we will discuss in later blogs):

(a) That the support will assist the participant to pursue the goals, objectives and aspirations in their plan

(b) That the support will assist the participant to undertake activities so as to facilitate the participant’s social and economic participation

(c)That the support represents value for money in that the costs of the support are reasonable relative to both the benefits achieved and the cost of alternative support

(d) That the the support will be or is likely to be effective and beneficial for the participant having regard to current good practice.

(e) That funding takes into account what is reasonable to expect families, carers, informal networks and the community to provide

(f) Is the support most appropriately funded through the NDIS?

The recent Administrative Appeals Tribunal decision in McGarrigle v National Disability Insurance Agency underlines the sheer diversity of documentation which marks NDIS decision-making and the planning process. In reviewing a decision by the Agency to refuse full funding for transport under a participants’ plan, the Tribunal highlighted the existence of a document entitled “NDIA – Plan Review – Conversation Tool’ which was formatted as a checklist for staff preparing a participant’s plan. This document directly stated that:

“Funding should never equate to the total funding required for transport – it is only ever a contribution”

Senior Member Toohey refused to place reliance upon this document as a form of policy, noting that “the basis for this instruction is not clear” and that it did not appear to be reflective of Acts, the NDIS rules or more formal policy in the “participant transport fact sheet”. This simple story is representative of how the Agency is trying (and sometimes failing) to structure its discretion in a principled manner – to properly come to grips with how individualised funding can be modelled, how statutory criteria and information come together. Families and community groups around Australia are similarly challenged to understand their place within the scheme, to find that vital information on what will be judged reasonable and necessary, and where the services are. At a time when Australia’s community legal centres are under increasing financial pressure – the question of managing conflict and imbalances of power becomes key.

Information as a reform principle? The Productivity Commission Review

As has been previously noted on this blog, the recently announced Productivity Commission represents a challenging moment for the Scheme. Any financial review becomes dominated by line item and budgetary reporting; investment becomes cost, and discussion of long term benefit is often ejected. Without being informed by the current insufficiencies in implementing the National Disability Strategy and the externalities of the NDIS, there is a danger that the Commission mechanism will be used by governments as a vehicle for intergovernmental boundary drawing and line item review. Debates about the cost of the NDIS may, in the current political climate, of being the equivalent of requiring a pie to be slicing before its constituent ingredients have been put together.

Amongst the often hidden, heavy lifters in the NDIS market are those working in community legal centres. In an excellent piece entitled “Access to the National Disability Insurance Scheme for People with Intellectual Disabilities Who are Involved in the Criminal Justice System”, Kenn Clift of Intellectual Disability Rights Service mapped the work necessary to ensure the transition to the NDIS of one single vulnerable individual with a cognitive impairment at 12 hours and 15 minutes:

“For people with intellectual disabilities the system is difficult to use, relying on skills that they may not have, particularly literacy, insight, and communication. It is unlikely that people with intellectual disabilities outside the service system and who are unknown to potential advocates will even be aware of the NDIS. As those of us who work with clients in the criminal justice system know, many of our clients do not access support services and are most unlikely to have an advocate.”

The work of community legal centres, so often does not appear in the line item reporting of many statutory schemes, yet it is catalytic and vital to their overall success. With significant cuts in funding for centres across Australia in flagged for July, at a time when Centrelink controversies, justice reinvestment and holistic linking of services dominate our public arena, key pathways and agents in the securing of information are at risk.

 

 

 

 

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