Barriers to NDIS access for First Nations communities in the lower Gulf of Carpentaria

II “~ Gidgee ~ Healing

Committee Secretariat

Joint Standing Committee on the National Disability Insurance Scheme

PO Box 6100

Parliament House

Canberra ACT 2600

By email: ndis.joint@aph.gov.au

Joint Standing Committee on the National Disability Insurance Scheme – NDIS participant

experience in rural, regional and remote Australia: Submissions on behalf of Gidgee Healing

Introduction

Gidgee Healing welcomes the opportunity to provide a submission to the Joint Standing Committee on the National Disability Insurance Scheme (NDIS). As the largest provider of primary health care within the lower Gulf of Carpentaria region of Australia, Gidgee Healing has a detailed understand of the operation of the NDIS in rural, regional and remote Australia, and in particular the experience of Aboriginal and Torres Strait Islander participants.

Gidgee Healing – Background

Gidgee Healing is the largest single Aboriginal Community Controlled Health Organisation (ACCHO) provider by land area in Queensland and has approximately 9,000 active patients. It comprises:

20 Native Title Group land areas;

12 Local Government areas;

two Queensland State seats (Mount Isa and Gregory);

two House of Representative Divisions (Kennedy and Maranoa); and

two hospital and health service regions (Central West and North West).

Gidgee Healing provides six key services across four locations – Mount Isa, Doomadgee, Normanton and Mornington Island. The key service areas are:

(a) primary health care;

(b) family well-being;

(d) mental health for young people – Headspace;

(e) Allied Health; and

(f) chronic disease care – Nukal Murra.

Gidgee Healing’s experience with the NDIS

As the sole primary health care provider within the majority of the communities that it serves, Gidgee Healing has significant hands-on experience in assisting Aboriginal and Torres Strait Islander persons with disabilities.
The overwhelming majority of the communities that Gidgee Healing serve are First Nations’ communities. The members of these communities have various comorbidities and require

significant amounts of care, at times extremely complex care. The range of disabilities experienced by the lower Gulf communities is varied and in many instances is the result of chronic disease.

Gidgee Healing has had limited success in accessing NDIS benefits for its community members. Indeed, notwithstanding having a footprint of approximately 9,000 active patients, only a handful of patients have successfully registered with the NDIS over the past five years. In Gidgee Healing’s respectful submission, these figures represent a gross underrepresentation of the population of the lower Gulf communities suffering from a condition where NDIS assistance would be life changing.
Put another way, any reports that provide numbers of persons taking up NDIS registration in rural, regional and remote Australia will be suffering from a significant statistical bias. This bias is felt firsthand by Gidgee Healing in seeking to assist members of the community who are eligible to receive NDIS benefits, but who for a variety of factors have failed to take up the program.

Barriers to entry

Gidgee Healing is aware of the June 2023 research report entitled “Options to improve service availability and accessibility for First Nations People with disability”. This report highlighted that First Nations persons are less likely to participate in the NDIS than their non-indigenous counterparts.
A lack of availability, accessibility and culturally-appropriate services for First Nations people with disability is a true lived experience for the community members that Gidgee Healing serves. Aboriginal and Torres Strait Islander people with a disability sit at an intersection of profound disadvantage when compared with non-indigenous people with disability. For example, they are more likely to have greater levels of need for care and support due to more severe disability; and they live in remote areas of Australia and face the challenges associated with thin markets including distance from specialists, difficulties in remote service provision and a lack of choice of providers. Finally, personal and community experience of trauma impacts the uptake of services.
In Gidgee Healing’s experience, there are significant barriers to entry for community members seeking to obtain access to benefits under the NDIS. These barriers include:

(a) the community is unaware and/or lacks clarity of the NDIS and the benefits available – there is limited promotion or education regarding the NDIS within the lower Gulf and a subsequent lack of awareness of the program within the community. This issue is exacerbated due to the lack of First Nations’ organisations to assist persons in registering with the program. Separately, the general health literacy of the communities is historically low and it is less likely that community members appreciate the need for regular health checks, including checks where disability services might be required;

(b) a lack of necessary identification documentation – a number of members of the community do not have birth certificates or other necessary identification documentation in order to obtain a Medicare or Centrelink number to allow for eligibility into the NDIS;

(c) the unavailability of specialists – the tyranny of distance is a lived experience by the communities of the lower Gulf and it is often the case that the specialists required to diagnose the various conditions that would allow a community member to otherwise qualify for NDIS are located a significant distance away from the community. Unlike metro regions, specialist services are not located within the lower Gulf, and if they do visit the region, it is for a small window in the year and availability of appointments is limited.

(d) upfront costs – often, there are significant up-front costs associated with achieving eligibility for the NDIS. These costs include the cost of seeking initial treatment, often travelling significant distances. In many cases, members of the communities that Gidgee Healing serve are not in a position to afford these costs and are therefore unable to formally register for the NDIS, despite living with conditions that would otherwise qualify them for the program.

These barriers, either by themselves, or more often than not in combination, have led to a lack of take up of the NDIS within the lower Gulf. There is a significant need for a solution to be found to assist these vulnerable members of the community who have fallen through the cracks in the system.

Case Study

An example of the barriers faced by a First Nations’ person in a rural and remote community in accessing the NDIS can be illustrated through the following case study:

A 24-year-old mother of three living in Doomadgee.
Two of her children, aged six and four, have been identified by a GP as possibly having Autism Spectrum Disorder (ASD). Individuals with ASD would ordinarily be eligible for benefits under the NDIS.
In order for a formal diagnosis to be provided, the mother would be required to take the children to a tertiary hospital or private specialist paediatrician. For those people living in Doomadgee, the nearest tertiary hospital is Townsville, some 1,600km away. With respect to paediatricians, visits by these specialists to remote communities are limited, and it is currently necessary for person to travel to Mt Isa, some 300km away, to seek an appointment. Clearly, there are significant costs involved in travelling to either Townsville or Mt Isa from Doomadgee to seek to obtain to visit a specialist to obtain the diagnosis required to obtain NDIS benefits. These costs are logically far lower for metro participants of the NDIS.
In the absence of a diagnosis for her children, the support available to this mother to assist with caring for her children is limited to what the local GP and other health workers can provide locally with limited resources.
The lack of availability of specialists to provide services to regional, rural and remote communities, and the subsequent unavailability of the NDIS, creates an impression within communities that the NDIS program is inaccessible for First Nations’ people. As a result, the NDIS program is seen as being culturally inappropriate for First Nations’ people.

Recommendation

The solution to the accessibility of the NDIS for First Nations people within rural and remote areas is complex.
In Gidgee Healing’s view, there are a number of steps that might be taken to increase the health literacy and knowledge of the NDIS within the lower Gulf communities. As an ACCHO, Gidgee Healing strives to educate the community on health care and takes steps to improve their overall health outcomes.
To the extent that there is scope for ACCHOs such as Gidgee Healing to be provided with funding to provide the services within community that would otherwise be made available under the NDIS, this option should be explored. Similarly, to the extent that ACCHOs can be empowered as conduits to access the NDIS, this should be encouraged.
Gidgee Healing submits that a move to a model where ACCHOs and other community-controlled organisations have ultimate influence or control over funding and health care outcomes in the communities is consistent with the Closing the Gap Report of 2020. Indeed, the observations of the Productivity Commissioner released in early February 2024 indicate that there has been limited success in moving towards community-controlled models. Gidgee Healing would support the NDIS being one such example where this move to community-control can occur as a priority given the needs of these vulnerable communities.

Gidgee Healing thanks the members of the Inquiry for considering these submissions. Should the Inquiry require any further information, Gidgee Healing is more than willing to discuss its experiences in further detail.