NDIA Accountability Project

Northern Territory Office of the Public Guardian Submission to the Joint Standing Committee on the National Disability Insurance Scheme

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Submission to the Joint Standing Committee on the

National Disability Insurance Scheme

SCHEME IMPLEMENTATION AND FORECASTING INQUIRY

FEBRUARY 2022

Office of the Public Guardian

Darwin Corporate Park

Building 3, Level 1, 631 Stuart Highway, Berrimah Postal: GPO Box 1722 Darwin NT 0801 Tel: 1800 810 979 www.publicguardian.nt.gov.au

Introduction

The Northern Territory Office of the Public Guardian welcomes the opportunity to provide a submission to the Joint Standing Committee’s inquiry into the scheme implementation and forecasting for the National Disability Insurance Scheme (NDIS) for consideration in their final report. This submission is additional to the brief submission provided to the Committee for consideration in their interim report.

The Office of the Public Guardian was established under the Guardianship of Adults Act 2016, which provides for the statutory appointment of an independent Public Guardian. The core functions of the Public Guardian are set out in section 61 of the Guardianship of Adults Act 2016, and include, but are not limited to:

  • being a guardian for an adult when appointed by a guardianship order or acting under section 44 or 45;
  • promoting access to support services for adults with impaired decision-making capacity and the guardians, families and carers of those adults;
  • encouraging providers of support services to monitor and review the delivery of those services; and
  • advocating for adults with impaired decision-making capacity generally, including by promoting understanding and awareness of relevant issues.

The Office of the Public Guardian teams are located in Darwin and Alice Springs and are responsible for providing guardianship services to approximately 604 adults represented by the Public Guardian. Compared to other jurisdictions, the Northern Territory has the lowest number of adults under guardianship orders, however, has the highest percentage of the population under guardianship.

There are approximately 390 represented persons involved with the Public Guardian who are current NDIS participants. The Office of the Public Guardian has attended many, if not all initial and review planning meetings for these participants in addition to the initial and review planning meetings of past participants. This involvement has provided considerable insight into the experiences of participants with impaired decision making capacity.

The Northern Territory context

The Northern Territory context has impacted the implementation of the NDIS across the Northern Territory. The challenges experienced in scheme implementation and forecasting in other jurisdictions are exacerbated in the Northern Territory and demand unique and tailored solutions to meet the needs of Territorians with disability.

Scheme implementation and forecasting for the NDIS

While most Territorians live in regional centres, a significant number live in remote and very remote areas. For Aboriginal3 people, who make up 30 percent of the Northern Territory population,4 almost 77 percent live in remote or very remote areas5. The Northern Territory population is also comprised of many culturally and linguistically diverse groups.

A small population spread across vast distances poses significant challenges to private and government service delivery and combined with harsh climates and rough terrain means health and other supports and services in many parts of the Territory are limited. The Northern Territory’s transient population impacts the retention of the skilled workforce as capable individuals have many alternate options elsewhere in Australia and the high cost of living is an additional challenge for those in the low socio-economic circumstances.

Approximately 78 percent of people involved with the Office of the Public Guardian identify as Aboriginal. Many speak English as a second or third language with a significant number living in remote communities. The Office of the Public Guardian has observed a disconnect from country and culture, with a high level of represented persons that identify as Aboriginal experiencing significant difficulties in receiving appropriate support services, including health care and NDIS supports and services, in remote communities.

Scheme implementation and forecasting for the NDIS

Proposed scheme implementation and forecasting is challenged by the Northern Territory’s unique context. Despite many positive outcomes for participants since the inception of the NDIS, concerns regarding the reduction in funding to participant plans and service provision continue to be a key issue for the Office of the Public Guardian. The current pattern emerging is showing that overall funding provided in plans and support services is decreasing, particularly supported independent living, resulting in NDIS services being unable to provide the level of care and support to enable the participant to live successfully.

The reduction in funding further exacerbates issues already faced by Territorians, especially for participants living in remote areas, who continue to be impacted by the lack of services and access to a full range of allied health professionals. This, along with the variability of experience and quality of service provided by Support Coordinators across the Northern Territory and the high staff turnover and inadequate training for new staff, provides a very challenging environment to provide appropriate supports and care.

The impact of boundaries of NDIS and non-NDIS service provision on the demand for NDIS funding

the availability of support outside the NDIS for people with disability (community based or Tier 2 supports)

The availability of support outside the NDIS for people with disability is limited. Since its inception there has been considerable focus and attention on the rollout, implementation and development of the NDIS with a perception that it will provide all supports for people with disability. This has resulted in some withdrawal of support services, including disability coordination services, adult allied health services and quality equipment services provided by the Northern Territory Government for people with disability outside the NDIS, and a decreased impetus to modify mainstream services to ensure accessibility for people with disability.

The Role of Support Services

In these settings it is crucial to ensure that the physical emotional and behavioural needs of persons with impaired decision making capacity are met. Although there is evidence of disability policy in these areas it has often not been realised in practice to ensure people with disability are appropriately supported to access mainstream health and justice services. For people with cognitive disability it becomes very difficult to navigate these and other mainstream services without the assistance of their NDS supports and services.

Additionally the broader context of disability reform detailed in the former National Disability Strategy 2010-2020 and similar state and local strategies is slow with disability reform traditionally under prioritised within both government and private enterprise. The establishment of the Royal Commission into the Violence Abuse Neglect and Exploitation of People with Disability has brought much needed attention to the lives and experiences of people with disability. Its work and recommendations together with the new National Disability Strategy 2021-2031 is hoped to lead to prioritised and strategized disability reform so that people with disability are supported to participate in and access their community and mainstream services.

Importantly in October 2021 the Northern Territory Government commenced consultations on the Northern Territories first Disability Strategy. The draft Strategies vision is that Territorians of all abilities are able to live life to their fullest potential and have quality services no matter where they live8 with a focus on improving access to mainstream services. It comprises six outcomes driven by action plans to show progress and achievements. A major aspect of the draft Strategy is the NDIS and how the potential of the NDIS can be maximised in the Northern Territory. The Office of the Public Guardian participates in one of the NT Disability Strategy Working Groups and is excited by the commitment of Northern Territory Government agencies to the improvement of the lives of people with disability. This commitment must be met with appropriate human and financial resourcing and must also be replicated across Local Government and private enterprise.

Future of the Information Linkages and Capacity Building Grants Program

The Office of the Public Guardian has limited experience of the Information Linkages and Capacity Building (ILC) programs funded and delivered in the Northern Territory. Despite this limited experience, the four programs within the ILC are noted and supported by the Office of the Public Guardian.

Funded programs to build the individual capacity of people with disability provide information on supports and services to people with disability their families and cares improve pathways to employment and improve the capacity of mainstream services to respond to and include people with disability are essential to addressing the limited support for people with disability outside the NDS. Future programs funded under the ILC should be outcome driven with a specific focus on how the program will meet the needs of people with disability to access supports and services beyond the NDS. Wherever possible outcomes should be measured and publically available on the NDS ILC webpage.

  • The interfaces of NDIS service provision with other non-NDIS services provided by the State, Territories and the Commonwealth, particularly aged care, health, education and justice services;

The Office of the Public Guardian has evidenced some improvement in the interface of NDIS service provision with other non-NDIS services provided by the Northern Territory and Commonwealth governments. Despite the improvements there is still uncertainty and confusion for stakeholders regarding the supports to be provided within or outside the NDIS and how gaps in supports and services for individuals will be addressed in a coordinated and holistic manner to meet the needs of the individual. On occasions the uncertainty and confusion results in a failure to meet the supports and service gaps in a timely manner and to the detriment of the person with disability. At other times it either results in or is exacerbated by inconsistent decision making by the NDIA.

The Commonwealth and state and territory governments must give a renewed commitment to the funding and delivery responsibilities of the NDIS and other service systems agreed in the Applied Principles and Tables of Support to Determine the Responsibilities of the NDIS and other service systems. This commitment must be accompanied by comprehensive communication strategies for stakeholders and transparent implementation across the NDIS and other non-NDIS services.

Aged care

At age 65 people who are not existing NDIS participants are eligible only for aged care supports. There is significant disparity in the level and type of supports available under Australia’s aged care system and those supports available to people who are eligible NDIS participants due to impaired cognitive capacity. In effect this is an interface gap that fails to respond adequately to the needs of people who have not sought supports previously under the NDIS or who have an acquired disability later in life (i.e. at age 65 or later).

People with impaired capacity aged 65 years and over who do not require residential aged care and are not existing NDIS participants can struggle to find appropriate accommodation and supports. In the Northern Territory there is a deficit of community based services for this group. There are reports of people waiting 6-18 months for community aged care packages which do not fully respond to or meet their disability/support needs. This leads to people being pushed prematurely into residential aged care at increased human and government cost due to their inability to access supports that would enable them to age in place with dignity. Additionally, residential aged care services are not currently resourced to provide the necessary services and supports to meet the needs of a person with disability aged 65 and over.

Health The Office of the Public Guardian has observed difficulties for people with cognitive disability in the interface between the NDIS and health systems. It can be difficult to attribute if a person’s needs arise from a health condition or from their disability which has seen a person’s disability needs now being met under the NDIS and not met under the health system due to cost preclusions or unavailability of the health care service.

The NDIS provides that the NDIS may fund reasonable and necessary support to give guidance and training for hospital staff working with a participant if they have challenging behaviours and give specific training to help hospital staff communicate with a participant in they have complex

Communication Needs

Despite this there is a disconnect in information sharing and coordination of supports between NDIS funded professionals and services and those provided in non-NDIS health settings, including hospitals and outpatient services. It is particularly concerning that relevant and necessary NDIS supports cannot go with the participant when they are accessing in patient services in hospitals. This can result in poor communication between the participant and health providers, the participant’s health and emotional needs not being met, the participant displaying behaviours of concern and extended duration of hospital admissions. This has a significant impact upon both the participant’s emotional and physical health and the human and financial resources of health services.

A person centred and holistic approach to health care which has consideration to both the person’s health and disability support needs and recognises the overall wellbeing of participants will provide for better health outcomes and experiences and a smoother interface between NDIS service provision and health services.

Housing Challenges and Inequities in Plan Funding

Housing availability across Northern Territory regions such as Greater Darwin, Katherine, and Alice Springs continues to improve steadily, marked by declining vacancy rates for houses and units.

A lack of flexible and affordable housing options significantly affects individuals engaging with justice and health systems. Specifically, inadequate supervision during accommodation can lead to cycles involving reoffending, incarceration, or prolonged detention without end dates. Similarly, delays in securing disability-ready accommodations may cause extended hospital stays beyond what’s medically necessary at considerable public cost.

It’s essential all levels of government commit themselves toward addressing suitable yet economical housing solutions throughout the Northern Territory. Efforts must focus on reducing waitlist durations while increasing accessibility features tailored towards people living with disabilities; additionally innovative strategies need development aimed specifically at curbing homelessness prevalence.

Variations exist regarding plan funding among NDIS participants who share comparable needs:

  • Factors contributing disparities between those residing within various Australian locales; The factors influencing differences amongst NDIS participant experiences based upon geographical location include several key aspects: o The difficulty faced when trying achieve personal goals outlined through plans due mainly because services required aren’t readily available especially so in rural areas where resources are scarce, o Additional challenges encountered particularly affecting Aboriginal communities along side others belonging culturally diverse backgrounds encompassing issues like poverty conditions alongside language barriers coupled together with overcrowded dwellings situations, o Limited informal support structures present notably impacting indigenous persons requiring relocation from their home environments merely for receiving adequate care related either directly connected healthcare provision or assistance concerning daily life activities typically found more commonly located near urban centers rather than remote regions, o Both formal and informal mechanisms aiding individuals understand rights they possess as well navigate complexities inherent to managing one’s own disability-related affairs under current framework established by National Disability Insurance Scheme (NDIS).

  • Whether inconsistent decision-making processes employed internally inside NDIA organization contribute toward unequal distribution patterns observed across different cases involving similar circumstances; The Office of the Public Guardian has noted discrepancies occurring frequently depending largely on expertise levels held both by respective NDIA planners responsible overseeing individual case management tasks plus also effectiveness demonstrated during coordination efforts undertaken jointly among involved parties. When these roles were filled effectively, participants tended benefitting greatly resulting into creation comprehensive yet personalized approach aligned closely matching unique requirements identified within each specific situation.

There exists concern expressed amongst certain members about belief that involvement facilitated via public guardian system might automatically grant greater access towards additional services simply because advocacy work carried out actively supported through extensive network connections maintained exclusively within office premises itself. This viewpoint raises serious questions regarding integrity surrounding guardianship appointments made solely upon necessity basis without any prior indication suggesting such outcomes would naturally follow suit.

perceived as necessary for people with disability to access appropriate and reasonable NDS

supports and services.

  • measures that could address any inequitable variation in plan funding; Inequitable variation in plan funding can be addressed by:

  • increased transparency of decision making by the NDIA

  • accessible NDIS policies and guidelines as both entire documents and in accessible formats

  • training of the NDIA workforce to understand and implement the NDIS policies and guidelines consistently

  • funded formal advocacy and/or support coordination for participants to understand, access and navigate the NDIS

  • simplified processes and procedures within the NDIS to enhance the capacity of participants and their family and carers to access and navigate the NDIS

  • addressing market failures with innovative and location specific strategies to ensure participants can receive the supports and services funded in their NDIS plans

  • further consultation with Aboriginal people with disability and their representative groups to increase the engagement of Aboriginal people with disability in the NDIS and to determine appropriate strategies and initiatives to deliver NDIS supports and services in remote communities.

The Office of the Public Guardian notes the legislative changes detailed in the NDIS Amendment (Participant Service Guarantee and Other Measures) Bill 2021 and that it is anticipated that these changes will address some of the above matters by improving NDIS processes and participants’ experiences. The success of these changes will need to be measured once they have been implemented into practice.

Financial and actuarial modelling and forecasting of the scheme including;

  • the role of insurance-based principles in scheme modelling; and
  • assumptions, measures, and methodologies used to forecast and make projections about the scheme, participants, and long term financial modelling; The assumptions, measures and methodologies used to forecast and make projections about the scheme, participants and long term financial modelling have proven to be limited and ineffective in the Northern Territory where there is a small, geographically dispersed population, a high prevalence of disability among Aboriginal people who are also experiencing multiple disadvantage and a limited disability workforce. Consequently, the intended outcomes of competition, inovation and consumer choice and flexibility of a market-based approach have not been realised.

In many parts of the Northern Territory outside Darwin and Alice Springs, there are no or limited NDIS supports and services to meet participants’ needs and participants are often required to move from their home communities in order to receive essential supports and services in regional and urban locations. The relocation of participants from their communities, family and other informal supports impacts the participant’s cultural and emotional needs and often results in an increased reliance on funded, formal disability support through the NDIS.

In Darwin and Alice Springs market development has been slow and thin markets are still evident for certain types of support including individualised skill development, allied health services,

behaviour support practitioners and supported independent living services that can support

participants with behaviour support needs. Often it is difficult to secure the services of a single provider with lengthy wait times and the provider not always possessing the necessary cultural expertise. There is also limited competition among service providers and existing providers are competing for quality workers and professionals from a limited pool, significantly impacting service creation and development. This has been exacerbated during the COVID-19 pandemic with closed borders impacting interstate professionals and workers from either relocating to the Northern Territory or providing a temporary or fly-in services.

Market failure in the Northern Territory means participants are unable to receive supports and services identified in their NDIS plans and therefore unable to reach personal goals that may impact the need and quantity of supports and services in the future. This impacts the scheme projections and financial sustainability.

The ongoing measures to reform the scheme including:

  • the new early childhood approach, including whether or how early intervention and other supports intended to improve a participant’s functional capacity could reduce their need for NDIS funding, and There is significant evidence to endorse early intervention and other supports intended to improve a participant’s functional capacity and how this can reduce the participant’s need for future NDIS funding. Importantly it can also ensure greater decision making autonomy for the participant throughout their life and reduce the need for formal guardianship.

  • planning policy for personalised budgets and plan flexibility.

The Planning Policy for Personalised Budgets and Plan Flexibility is intrinsically linked to the now abandoned concept of independent assessments. Consequently in its current form it is difficult to provide comment on this policy. However, the Tune Review recommended amendment to the NDIS Rules to clarify that supports in a participant’s plan should be used flexibly, except in limited circumstances, such as capital supports. The Office of the Public Guardian supports this recommendation and encourages the NDIA to work closely with people with disability and their representative groups in the further development and finalisation of the planning policy for personalised budgets and plan flexibility to ensure there are no unintended consequences for participants.

Conclusion and recommendations

Proposed scheme implementation and forecasting is challenged by the Northern Territory’s unique context detailed in this submission. Despite this, the NDIS has significantly changed the landscape of disability supports and services in the Northern Territory with many positive outcomes for represented persons. However, these supports and services demand continuous review to ensure that the NDIS continues to meet the evolving needs of participants. This review and any changes to the NDIS to ensure its sustainability must occur in consultation with people with disability and their representative groups.

  • The Northern Territory Legal Aid Commission should be re-funded to provide legal representation for participants at the Administrative Appeals Tribunal in relation to plan reviews.
  • There must be continued initiatives, including the ILC program to support people with disability outside the NDIS to increase access to mainstream services and community engagement.
  • The interface of NDIS service provision with other NDIS service provided by states, territories and the Commonwealth must be improved to ensure greater understanding of responsibilities by the participant and relevant stakeholders and to ensure any support and service gaps are identified to meet the needs of the participant.
  • The NDIA must continue to explore strategies and initiatives in partnership with people with disability and their representative groups to address NDIS plan inequities and the drivers of these inequities.
  • Location specific strategies and funding models must be developed in the Northern Territory to address market failures.