Sunday, 20 March 2016

Carelessness Abounds: Double Jeopardy for Remote Disabled Citizens


The National Disability Insurance Scheme involving a major reconceptualisation of the delivery of support to disabled citizens is currently being rolled out nationally.

The 2011 National Disability Strategy noted that the proportion of Indigenous Australians 15 years or older reporting they lived with a disability or long term health condition was 37 percent, twice the rate in the general population. The proportion was similar in both remote and non-remote regions, and did not include psychological disability.

The Minister for Social Security Christian Porter recently noted that bilateral agreements with all states and territories except WA and the NT had been finalised, and that in the case of the two outstanding jurisdictions, discussions were progressing.

Reflecting an appreciation that remote regions may have particular issues to address, the Commonwealth and NT Governments agreed in 2013 to establish a trial site in the Barkly region centred on the regional centre of Tennant Creek.

The NDIS released a rather brief and uninformative progress report on the trial in the Barkly region in October 2015.

The Australian Parliament’s Joint Standing Committee on the National Disability Insurance Scheme published a progress report in November 2015, which included an assessment of progress in the Barkly trial site: refer paragraphs 2.74 – 2.86 for progress on the Barkly Trial site and paragraphs 4.56 – 4.80 for a discussion of various issues relating to Indigenous clients and the challenges of implementing the scheme in remote areas.

On the challenges of delivering services in remote locations, the Joint Standing Committee made the following comments:

Challenges in the Barkly trial site

2.84 As outlined earlier, it is anticipated that the Barkly trial will provide valuable experience and understanding in delivering the NDIS in remote areas, which will inform the roll-out across the rest of the NT and other remote parts of Australia. Apart from dealing with the direct challenge of the high rate of disability among Indigenous Australians compared to the general Australian population, the implementation of the Barkly trial presents a number of specific challenges:

• low numbers of Indigenous Australians with disability accessing the disability service system—a contributing factor is the reluctance of Indigenous people with disability to identify as a person with disability. This presents a significant barrier to the successful implementation of the NDIS in this region;

• experience of Indigenous Australians when using services—a lack of confidence in dealing with, and a mistrust of, government agencies and service providers;

 • differences in cultural backgrounds and understanding between service providers and Indigenous Australians—this can form an impediment to effective delivery of support services; and 

• access to services—lack of available and appropriate services due to the remote location.

2.85 The fundamental principle of the NDIS is individual choice and control. Enabling Indigenous Australians to exercise such choice and control may be difficult where the absence of service providers in remote areas precludes meaningful choice.

2.86 The evidence that the committee heard in Darwin regarding the Barkly trial confirms the incredible difficultly in delivering high quality services to regional and remote areas of Australia and as such represents one of the biggest challenges to the Scheme.

Later in the Report, the Committee reported and assessed some of the structural issues underlying these challenges:

4.78 The NT Government's Minister for Disability argued that for some types of allied health services, and in some areas, there is no other option but to restrict the service delivery to only the NT Government:

The experience to date has highlighted gaps in the NDIA service delivery model in particular and around the coordination of disability supports and allied health services. There is no provision in a participant support plan for coordination of allied health supports. The Office of Disability has provided this coordination of allied health services for the trial due to the small numbers; however, it is not feasible on a larger scale. Under the NDIA model, a client may receive allied health services from three different providers, further exacerbating the fragmentation of services and required coordination. In addition to the implementation of a participant's plan is the reliance on a service provider to coordinate the disability supports for an individual. In the Barkly it has been difficult to identify service providers to provide this service.

4.79 According to the NT Government's Office of Disability, service providers 'are inconsistent in their availability to provide services', which leaves the responsibility of coordinating services with the NT Government.  The Minister continued with the conclusion that the unfortunate consequence of thin markets in remote areas is that the principle of choice and control that may be evident elsewhere will have to be sacrificed to ensure access and equity of services:

Whilst the principle of choice and control is supported by the Northern Territory it is not going to be feasible in thin and non-existent markets. In many instances the focus in remote areas needs to be on access and equity as a first step.



The Committee recommended that the Government ‘through the Disability Reform Council, make all haste with the finalisation [of] all the bilateral agreements for the transition phase of the National Disability Insurance Scheme’ (para 5.13).

In an as yet unpublished submission to the Joint Committee, the MJD Foundation (a small organisation based in North East Arnhem Land servicing around 500 people either suffering from or at risk of MJD, a neuro-degenerative disease similar to Huntington’s Disease) pointed to a series of deficiencies in current service provision for disabled citizens in the Northern Territory:

In the experience of the MJDF the following evidence provided at the [previous Committee] hearing reflects the current practice in non-trial sites areas where the MJDF operates (and in the Barkly prior to the trial commencing):

·         Wait times for mobility and other specialist disability equipment are frequently in excess of 6 months.

·         Disability specific transport is a significant an issue in every community and this is compounded by the unavailability of public transport or private transport/taxi options.

·         Services are provider driven, where cost restrictions, maintaining personnel and remote infrastructure challenges heavily impact on the scope of services available.  There is exceptionally limited access to therapeutic intervention and a high reliance on home based programs and family support (where programs are developed), and inadequate support for families to implement them.

·         FIFO/DIDO models are problematic because there are difficulties with getting and maintaining accurate personal information in real time and establishing appropriate relationships conducive to providing specialist disability support services. This is compounded, and demonstrated, by the very high turnover experienced in government provided services.

·         In the compilation of the Disability Audit, MJDF staff identified several people with disabilities in NE Arnhem Land who had previously not been identified or were not receiving services. 

·         There are very high levels of disability creating chronic disease and these comorbidities create a complex interface between primary health care and disability services that is not comprehensively addressed.  There is a siloed approach to the provision of disability care and primary health care, complicated by a delivery model that includes both Aboriginal Medical Service (AMS) and NT Department of Health provision.  See appendix A.

·         Current government provision has not enhanced local capital and capacity, for example there are no partnerships with local communities and other services for repairs and maintenance and equipment provision which would benefit consumers and communities alike.

There are accessibility modification needs across the NT, for infrastructure and public facility access, which will not be addressed through individualised packages.

COAG had originally scheduled the finalisation of the bilateral agreements for July-August 2015. Yet progress in finalising all the bilaterals has been slow, and as mentioned above two remain outstanding, including the agreement to establish the scheme in the NT.

The Commonwealth has made much of the alleged funding gap in supporting the full roll out of the scheme, recently announcing the establishment of a special fund to assist in financing the scheme. While not my main focus here, the rationale for such an account appears rather thin, but it does serve as a useful prop in making the political argument for the existence of a financing gap. What is relevant however is that the scheme involves joint commonwealth/state financial support, and the NT Government is chronically reluctant to commit to a demand driven funding model which it will not control and which will inevitably flow in large measure to the bush.

It is worth making the point that while there is a bipartisan commitment at the Commonwealth level to funding the full costs of the NDIS, the States, and for present purposes, particularly the NT have failed to make similar commitments, and have taken no action to transparently identify the funding to be allocated to the NDIS.

Unsurprisingly then, the Territory Government appears to be delaying signing up to the NDIS. It will be holding out for a greater share of Commonwealth funding (leveraging off its comparatively small scale) and is also arguing that it should control service provision rather than independent service providers. The irony of a political party normally associated with advocating market based policy frameworks which are underpinned by consumer choice and autonomy emerging as a proponent of increased government control and consequential reductions in opportunities for private sector development is remarkable.

If agreed by the Commonwealth, the risk will be that government controlled provider arrangements will increase the likelihood of ‘nickel and diming’ in the provision of individual services, particularly in remote regions. Moreover, the near-absence of advocacy organisations for disabled citizens in remote will minimise the opportunities for holding a government controlled provider arrangement to account.

A recent (unpublished) newsletter from an advocacy group on disability in the NT noted:

1 JULY FAST APPROACHING

Last week on Daryl Manzie’s morning program Minister Elferink was talking about the various “sticking points” there are in relation to the NDIS.  Pleasingly he did say it was not a case of if but when the NT Government will sign the Bilateral Agreement.  However according to the Minister, it will not be on the 1 July like most other States and the ACT.  Unfortunately in trying to justify the delay he firstly said the rollout was due to commence in 2017 not 2016, he failed to use the most recent stats available from the Barkly Trial, in relation to the number of participants, which stood at 127 not 109 and amongst other things he talked about equity and the fact that many people would now not be eligible for the scheme.  Minister it was never envisaged that everyone would be eligible, either because of age or not meeting certain criteria.  It was always going to be the case that State and Territory Governments’ will still have a responsibility to continue to provide services to those people.  Yes we know the Territory is both unique and remote, which does pose some very special challenges when it comes to service delivery, but surely we know enough now as a result of the Barkly Trial to sign the Agreement. Two things we know for certain, 1. There will always be issues regardless of how long we wait and 2. The trial has already been very successful and a real boost to business in Tennant Creek.  Planes are once again flying in and out, the town is very much alive and well and the Territory economy overall is set to continue to improve….

In contrast to the reported comments of the NT Minister, the NT Health Department web site indicates that the NDIS will commence in the NT in July 2016.

The NT Government’s approach to disability support has been opaque to say the least. The delay in signing up to the NDIS displays all the hallmarks of a strategy aimed at persuading the Commonwealth to just hand control of NDIS funding to the NT Government.

The argument outlined above that the provider market is thin in remote regions is accurate. The solution however is to build that market. The experience of the Aboriginal Controlled Medical Services is instructive in this respect. They were originally introduced to address exactly the same type of market failure: GPs were virtually non-existent in remote regions. Government action over a sustained period has essentially filled that gap, and built a network of medical services that while focussed primarily on treating Indigenous patients, increasingly provide services across the whole community in the areas where they operate. Moreover, the economic benefits of building a service provider capability in remote regions will be considerable.

Indeed, there would appear to be a potential social and economic opportunity here for Aboriginal Medical Services to expand their service delivery footprint into disability services as a contribution to building a market in these services in remote regions.

In the event that the Commonwealth caves in to the Territory Government’s hard ball bargaining, the outcomes for Indigenous Territorians living with a disability would be placed at risk given the Territory Government’s structural imperative to over-service (across the breadth of government services) its small and highly demanding urban electorates and the consequential poor record of service delivery to bush communities and in particular to the largely invisible (in political terms at least) disabled people in the bush.

It is time that the both the Territory and Commonwealth Governments got serious about remote Indigenous disability. There is a need for much greater transparency at the state and territory levels on the funding allocations for the NDIS. The Commonwealth should be insisting on a fully transparent model both to ensure accountability and to facilitate future adjustments to the model aimed at improving its effectiveness and efficiency.

The Commonwealth should also be supporting the development of provider capacity in remote regions, primarily because there are strong policy arguments against the establishment of a government monopoly in this service, but also because of the economic development potential in such a strategy.

Finally, consistent with the recommendation of the Joint Committee, the Commonwealth needs to stand up to the Territory, and ensure that an agreement to implement the NDIS across the whole of the NT is reached quickly. The terms of that agreement should ensure that the Territory Government delivers on its responsibilities to its remote citizens, and should provide for the transparency and provider capacity development which will ensure that the NDIS fulfils its potential in remote Australia.

The numbers of remote citizens living with disability may not be large in an absolute sense, however they and their families and carers face enormous challenges and yet they end up being doubly penalised: first as victims of disability itself and second as victims of government neglect and carelessness, in the sense that governments do not appear to care less about ‘invisible’ interests in the bush.

After all, it can hardly just be a matter of chance that the jurisdiction with the largest proportion of the most disadvantaged disabled citizenry is the jurisdiction which is slowest off the blocks in implementing the changes which offer the promise of transformative change.


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