PARLIAMENTARY JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME: INQUIRY INTO MARKET READINESS FOR THE NATIONAL DISABILITY INSURANCE SCHEME

MJD Foundation Submission

February 2018

Introduction/Background …………………………………………………………………………………………………………….. 2
Submission Purpose ………………………………………………………………………………………………………………. 2
Machado Joseph Disease Foundation …………………………………………………………………………………………. 2
Machado Joseph Disease ………………………………………………………………………………………………………… 2
MJD Foundation Supports/Services ……………………………………………………………………………………………. 3
MJDF’s Way of Working (“Two-Way”) with Client, Family and Community …………………………………………… 4

Commentary under relevant terms of reference………………………………………………………………………………… 5
a. The transition to a market based system for service providers …………………………………………………….. 5
b. Participant readiness to navigate new markets ………………………………………………………………………… 5
c. The development of the disability workforce to support the emerging market …………………………………. 6
d. The impact of pricing on the development of the market ……………………………………………………….. 7
e. The role of the NDIA as a market steward ……………………………………………………………………………… 8
f. Market intervention options to address thin markets, including in remote Indigenous communities ………. 9
g. The provision of housing options for people with disability, with particular reference to the impact of Specialist Disability Accommodation (SDA) supports on the disability housing market ……………………… 10
h. The impact of the Quality and Safeguarding Framework on the development of the market ……………… 10
i. Provider of last resort arrangements, including for crisis accommodation ……………………………………… 10
j. Any other related matters ………………………………………………………………………………………………… 10

Conclusions ……………………………………………………………………………………………………………………………. 11

Recommendations …………………………………………………………………………………………………………………… 12

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Introduction/Background

Submission Purpose

The purpose of this submission is to set out the MJD Foundation’s (MJDF) experiences in delivering services to Aboriginal Australians in remote and very remote communities in terms of current market presence of support providers and the challenges in transitioning to a market based system. Our aim is to provide this expertise and knowledge, and make recommendations in order to give the NDIS the greatest chance of success in these communities.

Machado Joseph Disease Foundation

Since its inception in 2008, the MJD Foundation (MJDF) has been working in partnership with Aboriginal¹ Australians, their families and communities living with Machado Joseph Disease (MJD) in a growing number of remote and very remote communities and urban centres across the Northern Territory (NT) and in northern Queensland (QLD).

The MJDF has substantial and unique experience in Aboriginal very remote non-government disability service provision. Services are delivered in response to the expressed needs of the client base, consistently, despite very high costs. These services were frequently designed to fill gaps in government service provision.

Machado Joseph Disease

MJD is a very rare genetic neurodegenerative condition, experienced at the highest rates internationally among Aboriginal people in the NT. It is a terminal condition that gradually destroys independence and impacts on every facet of life.

The disease is extremely disabling and of significant duration - those affected experience progressive symptoms for up to 20 years. Genetic ‘anticipation’, a phenomenon whereby children of those with the disease experience symptoms earlier than their affected parent means that the age at which the disease manifests is variable, with symptomatic children as young as twelve (12) known to the MJDF. Deterioration of function with MJD is gradual but inexorable and progression is more rapid with earlier age of onset. There is no remission or effective treatments, people who are able to walk independently at the onset of the disease will always end up using a wheelchair. Functional change however, occurs gradually over a number of years. During this time care needs change significantly, necessitating regular assessment and good planning.

The majority of the MJDF’s clients live in very remote Aboriginal communities². Those who live in urban centres such as Darwin, Alice Springs or Cairns have tended to do so in order to access specialist disability or high level support services as their disease progresses.

The MJDF uses the term Aboriginal in preference to Aboriginal and Torres Strait Islander in recognition that Aboriginal people are the original inhabitants of Arnhem Land. Aboriginal and Torres Strait Islander is referred to in the National context. No disrespect is intended to our Torres Strait Islander families and communities. The MJDF acknowledges the inclusion of Torres Strait Islanders who may be affected by MJD.
MJDF defines remote and very remote as follows:
Remote – ASGC-RA rating of R4 http://www.doctorconnect.gov.au/internet/otd/publishing.nsf/Content/locator
Very Remote – ASGC-RA rating of R5 http://www.doctorconnect.gov.au/internet/otd/publishing.nsf/Content/locator
MJDF also utilises the NDIS rural/remote Modified Monash Model (MMM) which further breaks down the ASGC RA categories to better represent variation in population size in rural and remote areas. http://www.health.gov.au/internet/main/publishing.nsf/content/modified-monash-model

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These maps show the locations where the MJDF’s clients live and where the MJDF provides services.

MJD Foundation Supports/Services

The MJDF conducted a Disability Audit in 2013³ in selected communities in North East Arnhem land and the NT Gulf region. The Audit analysed the current prevalence across all disability types (not just MJD) in these communities; the existing levels of service provision; the barriers to service provision; and the relevant issues for the National Disability Insurance Scheme (NDIS).

The Disability Audit found that people living with disability in these communities did not access the range of services they needed because the capacity to provide them did not exist at community level. In very remote communities the bulk of the existing services were provided by regional councils and consisted of meals on wheels, limited transport and some day respite and personal care. Even these inadequate services were not always available in some communities and were extremely variable both between communities and within communities over time. These limitations were strongly linked to availability of personnel and resources such as vehicles. Out of community respite in urban centres was frequently used as an urgent intervention in stressed care scenarios and was, in fact, de-facto care. High support needs clients required frequent urgent/crisis respite, and preventative provision to low and moderate needs clients was problematic.

Consequently, to improve the quality of life for people with MJD, the MJDF has endeavoured to ‘fill the gaps’ left by inadequate government services by facilitating and implementing vital treatments and interventions for clients that would otherwise not be available. These services include: occupational therapy, physiotherapy, and speech therapy, the provision of adaptive equipment, social and ‘on country’ outings, communication (iPad) training, genetic counselling and assistance to access

Disability Audit – NE Arnhem Land NT Gulf – A Snapshot of Indigenous Australian Disability in the Very Remote Communities of: Groote Eylandt Archipelago (Angurugu, Umbukumba, Milyakburra); Galiwin’ku; Ngukurr (including Urapunga) - http://mjd.org.au/cms/file_library/Other/Other_592.pdf

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community services. For those who have been relocated to receive care in urban centres, ‘kin connect’ programs allow return visits to home communities.

The MJDF also provides education and research services. It educates its clients, families and other service providers about the cause, management and treatment of MJD, and conducts research into better ways to manage the impact of MJD and possible prevention/treatments.

MJDF’s Way of Working (“Two-Way”) with Client, Family and Community

Relationships and respect for family and culture are at the heart of successful support for Aboriginal people with disabilities. The MJDF is only able to do the work it does with its Aboriginal and Torres Strait Islander clients because it puts the client, family and community needs at the centre of its working culture.

To achieve this client-centred approach, the MJDF’s engagement model is to always partner non-Aboriginal staff with local Aboriginal staff called MJDF Aboriginal Community Workers (ACW). This model values and respects a ‘two-way’ approach. The role of the ACW is to reflect family support needs, facilitate and attend MJDF client home, clinical and other visits with relevant non-Aboriginal MJDF staff; interpret at medical, allied health relevant meetings and appointments; educate and mentor non-Aboriginal staff/volunteers about relevant elements of Kinship and Culture; interpret and translate MJDF resources into first language; travel to other communities to talk about MJD and the work of MJDF and plan/attend respite trips as appropriate.

This ‘two-way’ model also demonstrates MJDF’s commitment to community capacity building and Aboriginal and disability employment.

The MJDF underwent an independent Quality and Safeguards Framework Assessment process for its registration as a service provider under the NDIS in March 2017. That independent assessment found that:

“clients, their families and their kin willingly engage with the organisation, and make decisions based on cultural and social needs. Family, extended kin networks, and community members are involved in support delivery. Clients interviewed were open, direct, confident and engaging about their experiences with MJD and how the Foundation was helping them and their families.”⁴

This positive feedback from our clients puts MJDF in a good position to recommend ways in which the NDIS should be operating to maximise the benefits for Aboriginal people with disability in remote Australia.

Report of MJDF Services Assessed by HDAA to the Northern Territory Quality and Safeguarding Framework, 31 March 2017.

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Commentary under relevant terms of reference

a. The transition to a market based system for service providers

The MJDF’s experience in transitioning to a market–based system has not been as difficult as some other organisations because the MJDF was not historically block funded by the NT Government for disability supports. However, our experience and detailed knowledge of the challenges of many other Disability Service Providers confirms that the market based system as currently constituted is seriously flawed (see links to our previous submissions to PC⁵ and Joint Standing Committee⁶).

Substantial resources are needed for management and staff to be informed about the NDIS. To effectively respond to the advent of the NDIS, MJDF has undertaken continual review of its policies and procedures in order to be NDIS ready, conducted staff training and provided significant assistance to clients (and their families) in order that they are informed about the NDIS. Client (participant) engagement and understanding of the new mechanisms is critical, but not supported well by the NDIA in terms of their planning processes – particularly with regard to timelines and appropriate explanatory resources. Additional costs associated with getting ‘NDIS ready’ included: infrastructure (new accounting systems/personnel; understanding of changes to cash-flow and liquidity; provider registration; understanding the NDIA’s terms of business; undertaking the Quality & Safeguarding Framework assessment; using and navigating PRODA; financial management; governance arrangements and business planning.

The result is that MJDF bore the entire cost and effort – stretching organisational capacity and impacting existing service delivery and staff wellbeing.

MJDF has not changed its focus or model of engagement with the arrival of the NDIS as the organisation was already client and family-focused. There was however some work necessary to mitigate potential negative perceptions associated with fee for service/accountability issues.

b. Participant readiness to navigate new markets

The MJDF’s client base (which includes the person with MJD, plus their families) has required a lot of assistance to coordinate their supports under the NDIS (to navigate markets, where they may be available). Machado Joseph Disease is a complex degenerative disease, and as an individual progresses to the stage of being eligible to enter the NDIS scheme, they are also entering the debilitating state of the disease where their mobility, speech, vision and continence are all impacted. It becomes more challenging for them to navigate the complex range of disability and mainstream (primary health, centrelink, housing) supports that they require at the same time, and often experiencing significant points of crisis throughout this journey.

In many cases, our MJD clients are motivated to engage with the ‘market’, however the complexity of MJD, remoteness and non-existing (or thin) markets, and historical disadvantage all combine to reduce their ability to engage, but not the desire.

In many cases, we see less of a willingness to engage with new services coming into the market especially where there is no established trust. Remote and very remote communities experience a revolving door of consultants, new government programs, rebranded government programs and government employees seeking consultation about policies. As just one example, in the 10 years that the MJDF has been operating, the government program to manage unemployment has been changed

MJDF Submission to the Productivity Commission on NDIS Costs (2017) http://mjd.org.au/cms/file_library/Other/Other_950.pdf
MJDF Submission to the Parliamentary Joint Standing Committee on the NDIS: Transition arrangements (2017) http://mjd.org.au/cms/file_library/Other/Other_955.pdf

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from CDEP to RJCP to CDP. In MJDF’s experience, this can lead to a level of disengagement from community members, and reiterates the critical importance of trusted relationships and consistency over time to build effective ‘markets’ with engaged participants.

In transitioning to the NDIS, MJDF staff members have spent between 4-16 hours per client in assisting clients to understand and navigate the new system, participate in their planning process, and understand their plan, and explaining the new service agreement arrangements. This was all time spent before MJDF could draw down from the plan.

c. The development of the disability workforce to support the emerging market

The MJDF’s Remote and Very Remote Service Delivery Statement and Policy⁷ outlines the barriers to remote service delivery, all of which directly affect the ‘market’. Many of these barriers directly impact the Workforce strategy for organisations operating in a remote and very remote context.

Some of the characteristics of providing supports in remote and very remote locations include: extreme weather conditions (cyclones, flooding, hot/humid temperatures); high delivery/freight costs; high staff turnover due to remoteness, inadequate staff housing, dry communities, burnout; culturally oriented community issues (closure for respect, gender matching for workforce/clients, family based decision making); differences in conceptualisation of disability in western medical terms in an Aboriginal context. All of these characteristics have a direct impact on securing a skilled and motivated workforce.

There is an urgent need for staff /community housing to accommodate workers which currently undermines the ability to deliver services let alone create a competitive market for quality services. The recent failure of the Commonwealth Government to agree to renew its previous substantial investment via the COAG inter-governmental partnership on remote community housing highlights the fact that this significant need is unlikely to be addressed in the foreseeable future and will only exacerbate the already chronic shortages.

Under the current NDIS pricing structure, an organisation can have difficulty implementing its desired workforce structure. There is also a lack of ‘critical mass’ of participants in many remote locations to enable an organisation to support a workforce that has range of skills and qualifications (and salaries), and often a highly skilled professional may be required to perform tasks that attract a much lower unit price from the NDIS.

There is a need to consider realistic appropriate training/education/mentoring programs to develop capacity in community – health care/disability apprenticeships/ community based rehabilitation model potential.

The MJDF’s remote workforce model is at significant risk as many elements of the workforce model will not be covered even with the 20% loading in remote areas and 25% in very remote areas.

Some of the policies implemented by the MJDF to take steps (within our control) to maintain a strong remote workforce are:

Adopt an intercultural ‘two-way’ partnering model on Aboriginal and non-Aboriginal workers to engage with clients and families in provision of supports
Ensure a senior cultural advisor is on staff
Ensure interpreters are used for first language support with client/family engagement
Utilise the expertise of screening services when recruiting non-Aboriginal staff who will work in remote communities
Place significant emphasis on cross-cultural training (both formal and informal) as part of induction, and probationary employment periods

MJDF Remote & Very Remote Service Delivery Statement and Policy (2013) http://mjd.org.au/cms/file_library/Other/Other_986.pdf

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Develop tailored staff care plans with particular emphasis on staff wellbeing and the risks to staffs’ wellbeing working in a cross-cultural and high disadvantaged setting
Facilitate and encourage ongoing training opportunities for local workers
Provide a high standard of basic training to address WHS hazards related to working in a remote setting including: staff capability around resilience & wellbeing, defensive dirt road driver training, cheeky dog education, alcohol and other drugs awareness training, suicide intervention training, domestic violence and abuse response training
Adopt a 1:1 and group staff supervision model
Ensure staff working and living in remote communities have exclusive staff accommodation, and are not sharing with other staff

There are still a number of very remote communities in which the MJDF provides fly-in-fly-out (FIFO) or drive-in-drive-out (DIDO) supports due to the inability to secure staff accommodation. See also point (d) below in regards to Provider Transport.

d. The impact of pricing on the development of the market

In 2017, the MJDF completed a Unit Costing⁸ exercise aimed at: ensuring MJDF had an accurate understanding of the costs of providing its current services; enabling a comparison between MJDF costs and NDIS prices (urban, remote and very remote); enabling the Board and Management of MJDF to make informed decisions when revisiting the MJDF Strategic Plan in light of the impacts of the NDIS; add value to the sector by providing an evidence base. The findings were: NDIS pricing is not sufficient to cover the costs of delivering high quality disability supports in all settings (urban, remote and very remote). This is exacerbated in very remote communities, and the remote and very remote loadings do not cater for the other complexities/challenges of remote service provision.

The 2017/2018 price guide does not take into account the distance required to travel to remote and very remote clients. While noting that provider travel cannot be claimed from home to workplace/first participant or workplace /last participant to home, this severely limits capacity to deliver service. The MJDF has substantial evidence to show the cost and time associated with provider travel, as the distance can be up to several 100 kms from work/home to the participant’s home. Furthermore, the maximum amount per annum claimable for a provider to travel to deliver therapeutic supports is set at $1,000 per participant. We again argue that this is not a cost-neutral price. The MJDF advocates for exceptions to the Provider Transport rule. MJDF presses for the NDIA, as a matter of urgency, to consider entering into travel agreements (outside of individual participant plans) with specific providers for provision of services to remote and very remote regions. While possible under the current Price Guide this has not been made available to MJDF to date. The Price Guide also dictates the need for service providers to have business arrangements for cancellations/’no show’ and allows for the provider to claim up to eight times for personal care/community access supports and two hours per Service Agreement for therapy services. Regrettably, this provision does not take into account known imposts such as cultural obligations, community closures for Sorry Business/Funerals and weather events. This adds another substantial cost impost on service providers.

MJDF Unit Costing (2017) http://mjd.org.au/cms/file_library/Other/Other_953.pdf

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e. The role of the NDIA as a market steward

There are some positive examples where the NDIA has supported the MJDF’s innovation notably pooling of participant funds to support an “On Country” program on Groote Eylandt.

However, in the main, the NDIA has not taken a proactive enough approach in the NT. There appears to be no strategic approach to addressing markets, and instead a hurried bandaid approach seems to be the norm. An example of this is the following case study. The MJD Foundation has only 1 NDIA participant living in Gunbalunya (Oenpelli).

Case Study: The NDIA approached the MJDF to ask us to consider being a ‘Plan Manager’ for our client because the key community disability supports are provided by West Arnhem Regional Council and they are not planning to register for NDIS as a support provider. This means that a plan manager is the only option to facilitate the funding flow and requests for supports to ensure a participant can receive supports. MJDF questioned the overall strategy of approaching MJDF given we only have the one participant. MJDF sent the following email to NDIA:

“Hi NDIA,

In regards to the current NDIS transition in Gunbalanya (Oenpelli), as you know the MJDF has 1 NDIS eligible client that resides there. And her planning occurred last week with the NDIA. The feedback we received after the planning is that there are no registered NDIS support providers in Gunbalanya, and I have received a query from my team about whether MJDF would consider doing Plan Management for our client so that we can broker the supports through non-registered organisations.

I have spoken with West Arnhem Regional Council who has confirmed with me that they are NOT planning to register for NDIS. When I asked how they will continue to provide supports to people transitioning to NDIS, they have noted that they are relying on another registered organisation to fund (subcontract) them.

So I guess my concerns are two-fold:

MJDF plan managing 1 participant in Gunbalanya would help that participant, but strategically is not a great solution for the community

Is there an engagement strategy for Gunbalanya, or a Local Support Group approach similar to the CCID funding we’ve received for Groote? “

The NDIA responded by saying:

“We are currently looking for providers to take on participants in Gunbalanya. It may not be a bad idea if you look at potentially supporting the MJD participant for now until things start moving there”.

MJDF has taken on the Plan Management for this participant, and she is receiving supports through WARC, however we have not heard anything further from the NDIA.

The fact that MJDF has taken on Plan Management for just one client means that MJDF is performing this function at a loss, as there had been a strategic decision by MJDF’s Board to not take on Plan Management. In this case however, MJDF felt a moral obligation to take on the role as without this, our client would not have been able to receive ongoing supports from West Arnhem Regional Council.

In reviewing the quarterly report from COAG of 20th September 2017, at p 190, it is noted that the cumulative payments by financial year, compared to committed supports shows at the end of 30 June 2017, the utilisation rate for the Northern Territory was 38%. While data is still emerging, such a low utilisation rate at that stage is indicative that the NDIA is having difficulty with stimulating a diverse market and is therefore lacking market stewardship. The NDIA needs to move from an adhoc, light touch to encouraging the communities in the NT and trusted allies to develop place based responses to local markets. This is the essence of market stewardship by providing an environment that is innovative, that allows for market commissioning to be based on local supply and demand within a trusted community framework. There is a thin market in the NT, meaning there are few participants

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who are wanting to purchase NDIS services/products and few organisations/sole traders who are offering services/products. The development of the market requires the NDIA to have a greater understanding of the prevalence and incidence of disability, thereby understanding the true quantum of possible demand i.e number of potential participants. It is questionable that the numbers in the NT Bi-lateral are correct.

f. Market intervention options to address thin markets, including in remote Indigenous communities

There are numerous intervention strategies that the MJDF would recommend especially for remote and very remote communities, including:

Currently the NDIA has limited visibility of which support providers are actually working in each community. NDIA has access to registered outlets (which is often just a head office postcode), but they have no visibility of what supports are provided in community by the organisations and whether the organisation has staff based in the community or whether they are FIFO/DIDO. It is recommended that an updated Market Position Statement be developed, and that this level of data is collected.
Following from this, the NDIA should provide more transparent published and detailed information of supports available by community (and the gaps) which would highlight potential ‘new markets’ to emerge. The NDIA should also develop more comprehensive metrics and benchmarks to assess demand (by skill-set and support category) in regions/communities.
Under the bilateral agreement with the NT, the NT Operational Plan notes on page 21: “The approach of the NT Government to direct service delivery of specialist disability supports will be shared with the NDIA by Quarter 3, 2017-18”. MJDF knows for a fact that there are non-Government organisations that are considering a move into remote communities but are not willing to make the commitment until the NT Office of Disability (OoD) strategy is understood. In some cases, the NT OoD is encouraging referrals to it for supports, and in other cases it is not. There is no visibility as to its strategy and supports that will be provided now and into the future.
Given the high costs, and significant barriers to organisations providing remote service delivery, there could be financial incentives (both capital and operational) for businesses to provide services.
Adopt a specific strategy aimed at addressing the staff accommodation/office space shortage
Ensure proper engagement practices with Aboriginal people are used by new providers. That is, cultural competency should be an essential criteria for applying to be a service provider and included in the Safeguards and Policy framework.
Publish a provider of last resort policy for the NT.
Encourage and support collaborative service provider models and forums with a calendar defined well in advance (rather than a couple of week’s notice).
Amend the NDIS price guide to allow for the realities of remote Aboriginal community life. Market economics are transactional and neoliberal ideologies which are often at odds with Aboriginal people. In kinship based societies such as the communities that the MJDF works with, the personal interactions/engagement include the kin and are relational. This takes time. Time means money to establish or build on existing Aboriginal kinship networks. The NDIS price guide does not allow for this to occur.

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g. The provision of housing options for people with disability, with particular reference to the impact of Specialist Disability Accommodation (SDA) supports on the disability housing market

In the very remote community context, there are no available SDA options in the communities in which the MJDF works. All clients who require this level of support are transitioned to urban centres (Darwin, Alice Springs or Cairns).

There is demand for SDA options in very remote communities, and in some cases (like Angurugu, Groote Eylandt) the capital is on the ground by way of a purpose built facility (this facility was funded by Federal Aged Care funding as a Flexible Centre potentially allowing for brokered disability care), however the ongoing barriers (noted above) to delivering remote services have outweighed the ability for a permanent SDA 24/7 facility to occur.

MJDF clients who have moved to Darwin/Alice Springs have expressed a desire to return to their country to live. It is recommended that a pilot SDA site be trialed to determine the cost/benefit of providing specialist accommodation on country in a very remote community.

The MJDF notes with interest that the NDIS Specialist Disability Accommodation Framework provides no reference to understanding the nuances of land usage in areas such as the Northern Territory. The presumption of the SDA policy is that the building of new disability housing stock will only be on Crown and Freehold held lands. Much of the focus of the development of a mature SDA market focuses the drivers on financing options, regulatory regime, price and investment certainty. It is imperative that the NDIA include the impact of Native Title, Land Rights Act and Indigenous Land Use Agreements in the development of understanding how land can be made available for SDA. It is recommended that the NDIA give consideration to discussion with the NT Aboriginal Land Councils.

h. The impact of the Quality and Safeguarding Framework on the development of the market

Many Aboriginal & Torres Strait Islander organisations in the NT are choosing not to register as a provider with the NDIS because of the onerous requirements of the registration, complexity of the portal and Q&SF process. Refer to comments made in section (d) and (e).

The impact of this is that the MJDF has had to take on a Plan Management role for just one client (see Gunbalanya case study above) so that these unregistered providers can continue to provide existing services to MJDF clients.

i. Provider of last resort arrangements, including for crisis accommodation

There has been no reportable progress on a Provider of Last Resort strategy for the NT.

Crisis accommodation is urgently needed in NT remote communities – often a participant with MJD will be cared for by another person who themselves are in the early stages of MJD. Respite/Short term accommodation is used as crisis management, and often the person with MJD and the carer need to be sent to Darwin to manage the crisis.

j. Any other related matters

More information is needed to allow registered support providers to make sound business decisions in the interests of their clients. As per above, under the bilateral agreement with the NT, the NT Operational Plan notes on page 21: “The approach of the NT Government to direct service delivery of specialist disability supports will be shared with the NDIA by Quarter 3, 2017-18”. The NTG should publicly state ASAP which disability services it will continue to provide across what locations.

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Conclusions

The MJD Foundation has substantial expertise and proven experience providing services to some of the most marginalised and isolated people with disabilities in Australia. Over the past decade the organisation has built robust practices, by developing flexible and innovative responses to frequently difficult conditions. Core to this has been a genuine commitment to working with the communities affected, developing a co-designed practice model, incorporating the employment of local Aboriginal people (43% of MJDF Board/Staff) and people with disabilities (17%).

The advent of the NDIS was seen by the organisation as an opportunity, but also posing significant risk. Employing an iterative process of education and resource allocation has culminated in tailored processes and meant that the MJDF has managed to navigate the implementation of the NDIS in the NT.

This has not been without cost. The organisation has invested substantial financial, in kind and dedicated resources up front for which there is no recompense. The process has revealed a lack of appropriate support from the NDIA and the NTG for the important transition period. This has been amplified for organisations that largely received block funding and have struggled to adapt to a completely altered service model, in some communities culminating in a refusal to register as providers at all. There have been lost and late opportunities to engage and encourage inter-agency collaboration that would have greatly assisted these isolated providers.

Administrative and technical issues are often amplified in the remote context and for small isolated providers. A general paucity of system support demonstrates that the NDIA has underestimated the organisational changes required to register, accredit, use the portal and assist clients through the planning and implementation process.

The chief casualty of the limited transition support has been clients’ ability to navigate the new market based system. Prior to roll out in the East Arnhem region it was clear that the largely Aboriginal clients requiring NDIS supports would have different requirements to those in urban areas. The language and cultural brokerage support that was necessary largely fell to the existing service providers - further stretching their resources. Engagement by clients with the process has been limited because there was neither enough time nor resources allocated to ‘bringing’ the clients along. Instead a focus on deliverables (plans developed and activated) reflected an orientation to quantity over quality.

Workforce development opportunities have been overlooked through the transition because the very basic requirements (housing and staff training support) have not been in place. Without appropriate loading, workforce stratification in remote locations is problematic. Those who need the services are geographically scattered, requiring a range of supports from basic personal care to highly specialised allied health interventions. Organisations are therefore forced to prioritise some supports over others.

Current pricing is objectively insufficient to provide appropriate, quality services. Provider transport allocations are particularly problematic, do not consider the vast distances and far from cost neutral. Current NDIA price guides simply don’t equate to the real costs and realities of delivering quality, cost-effective services in remote & very remote Aboriginal communities.

Market stewardship by the NDIA has been mixed in the experience of the MJDF. While some opportunities presented by the organisation (such as pooled funding) have been welcomed, there are entire communities for whom registered service providers are lacking. Ongoing issues, matching the thin market with appropriate service providers, requires more targeted intervention by the NDIA.

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This is hampered by the limitation to visibility of service providers by community, as well as the poorly articulated NT OoD and provider of last resort strategies.

Supported Disability Specific and Crisis Accommodation in remote communities is almost non existent. Demand has been met by transitioning people to urban centres. The disastrous impact of client well being aside, the missed opportunities for enhancing local community capacity and workforce are significant should this continue.

Recommendations

The MJDF therefore recommends:

The NDIA to publish provider of last resort policy.
The NDIA to implement a strategic policy approach to addressing the lack of services in remote communities and review its price guide consistent with the proposals outlined in this submission, MJDF’s Unit Costing Study and submissions to McKinsey and the Productivity Commission.
The NTG, Commonwealth Government and the NDIA jointly commit to ensuring the provision of adequate office space/accommodation for service providers and local community employment in remote locations.
New service providers entering the market to provide services to Aboriginal & Torres Strait Islander participants should be required to demonstrate a proven track record in proper engagement practices.
The NTG to publicise which disability services it intends to continue to provide (in which locations) under the NDIS, and the precise timing of withdrawal of services.
The NDIS to provide a yearly detailed market position statement outlining gaps in the market (skills/support items) by location across the Northern Territory.
Review of the transport and cancellation/no show price provisions, encouraging entering into contracts for block funded provider transport outside of individual NDIS plans for providers in remote and very remote communities.
The NDIS fund a pilot SDA site in a very remote community in the NT.

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Experiences in delivering services to Aboriginal Australians in remote and very remote communities