NDIS Participant Experience in Rural, Regional Areas

Submission 85 - Attachment

August 2023

The NDIS Workforce and First Nations People

Improving the Cultural of the NDIS Workforce to Meet the Needs of First Nations People With Disability

For the National Disability Insurance Scheme (NDIS)

####### Review

Acknowledgements

FPDN greatly acknowledges the voices and expertise of First Nations people with disability who have had experience with the NDIS and thanks them for sharing their stories.

FPDN acknowledges the funding and support from the Department of Social Services and the NDIS Review Secretariat to undertake consultation with community to inform our submissions to the NDIS Review. Our submissions also draw from previous consultations and data collected with and for community in ensuring the NDIS meets the diverse needs of our community.

About FPN

The First Peoples Disability Network (FPDN) is a national organisation of and for

Australia’s First Peoples with disability, their families, and communities. Our

organisation is governed by First Peoples with lived experience of disability. We are

the custodians of the narratives of First Peoples with disability, their families, and

communities, and we recognise this important responsibility.

FPDN was established informally in 2010 and registered as a public company limited by guarantee in 2014 and has a network across Australia in remote, regional and urban locations. FPDN is the community-controlled disability peak and a member of the Coalition of Peaks, a partner to all Australian governments to the Closing the Gap National Agreement. We are also the First Nations Disability Representative Organisation actively representing the voices of First Nations peoples within Australia’s Disability Strategy governance structures. For millennia, First Nations peoples, communities, and cultures have practiced models of inclusion. However, despite this, since colonisation, First Peoples with disability and their families have been and continue to be amongst the most seriously disadvantaged and disempowered members of the Australian community. FPDN gives voice to their aspirations, needs and concerns and shares their narratives of lived experience.

Our purpose is to promote recognition, respect, protection, and fulfilment of human rights, secure social justice, and empower First Peoples with disability to participate in Australian society on an equal basis with others. Our extensive national work includes community engagement, capacity building and rights education; systemic advocacy, policy, research, evaluation and data; the development and delivery of evidence-informed training and resources with community for community and to a range of sectors including the Community Controlled sector and mainstream disability sector, Commonwealth and state/territory government policy and service delivery agencies and departments. FPDN also has an international presence and networks, including with the United Nations, and provides consultancy and support to international regions.

We follow the human rights framework established by the United Nations Convention

on the Rights of Persons with Disabilities (CRPD), to which Australia is a signatory,

and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

We are also guided by both the social and cultural models of disability. The social

model views ‘disability’ to be the result of barriers to equal participation in the social

and physical environment. These barriers can and must be dismantled. However,

FPDN recognises the critical need to move beyond a social model to ensure the

cultural determinants of what keeps First Nations people with disability strong is

centred when working with and in designing policies and programs to improve

outcomes for First Nations people. We call this a cultural model of inclusion.

A cultural model of inclusion recognises the diversity of cultures, languages,

knowledge systems and beliefs of First Nations people and the importance of valuing

and enabling participation in society in ways that are meaningful to First Peoples

(Avery 2018). A First Nations cultural model of inclusion includes the human rights

framework and the social model of disability to ensure that enablers, approaches,

services and supports are culturally safe and inclusive, and disability rights informed.

It is the only disability model that seeks to improve the human condition through ocussing on what keeps people strong, as distinct to merely negating the adverse impact of difference.

Our community has to operate in multiple worlds – First Nations, disability, and mainstream society. The disability sector reflects this and is a complex and interconnected web of approaches to enable First Nations people with disabilities to realise their rights to participate in all aspects of their life, including the NDIS. These enablers, approaches, services and supports need to exist across the entire life-course, including the Aboriginal and Torres Strait Islander Community Controlled Sector and mainstream disability sector, as well as mainstream organisations and services. They also need to exist across the early childhood development and care, education, health, social and emotional wellbeing, employment, housing and justice sectors.

We recognise the unique opportunity the NDIS Review offers in improving its design and implementation to ensure First Nations people with disability engagement and

benefit of the scheme is culturally safe and inclusive, equitable and disability rights

informed. By centering a cultural model of inclusion, through elevating the

experiences, aspirations, needs and rights of First Nations people with disability the

NDIS can be strengthened not only for First Nations people with disability but for all.

Executive summary

For millenia, First Nations peoples, communities, and cultures have practiced models of inclusion. This embracing of diversity and inclusion “is derived from a belief system and worldview of humanity in which biological, physical and intellectual differences are accepted as part of the fabric of society (Avery, 2018).” Drawing on nation-wide available data, First Nations people with disability are included in their own communities across social, cultural and community events on average more than other Australians with disability.

However, despite this strength, since colonisation First Nations people with disability experience significant levels of inequality across all other life areas compared to other Australians, including in areas of health, education and social inequality (Avery 2018; ABS 2016). Whilst population prevalence data is limited4, First Nations people are twice as likely to experience disability than the rest of the Australian population (ABS, 2016). Using the statistical definitions of ‘severe and profound disability’ in the Australian Bureau of Statistics (ABS) datasets, including the ABS Survey of Disability, Ageing and Carers (SDAC), 2018, it is estimated that over 60,000 Aboriginal and Torres Strait Islander people live with severe or profound disability in Australia today (Avery 2018)5.

First Nations people with disability experience many intersectional forms of discrimination, including discrimination based on age, gender, sexuality and geographic location. These intersecting forms of discrimination are institutionalised and embedded in workforces, policies and programs have been designed, including the NDIS. Ensuring a culturally safe, inclusive and disability rights informed workforce sector will improve access to and better outcomes for First Nations people with disability. Further to this, investing in a First Nations workforce, targeting the community controlled sector should be prioritised given the evidence that Aboriginal

and Torres Strait Islander community-controlled services are better for Aboriginal

and Torres Strait Islander people, achieve better results, employ more Aboriginal and

torres strait islander people and are often preferred over mainstream services.

Drawing on the disability sector strengthening plan, whilst there is a lack of current

and comprehensive workforce data across the sector, the available data suggests

that overall the first nation disability workforce is either emerging or limited. Despite

national and jurisdictional and national employment and workforce strategies, they

do not pay specific attention to the community-controlled disability workforce. An

aboriginal and torres strait islander human services workforce plan will go some

way to address this gap. However, a broader focus on workforce data will be

required to achieve a more comprehensive understanding of existing gaps.

There are a range of workforce challenges including:

Workforce attraction and retention to meet growth and demand, including non- competitive remuneration
Limited recognition, opportunities and / or support for the development of local First Nations workforce and their cultural knowledge, community connection and skills and the long-term commitment to supporting their communities.
In regional and remote communities, services are often reliant on an external workforce; the need for transportation into and between remote communities, difficulty recruiting, training and retaining staff, lack of accommodation options for staff and limited support for staff.
First Nations peoples experience barriers in obtaining requisite qualifications due to barriers such as birth certificates, drivers licences
- There is a gender imbalance to caring roles
- Existing carer responsibilities are not remunerated
- Limitations within the Disability Support Pension policies regarding work

Submission from First People’s Disability Network

This submission was written by First People’s Disability Network for the National

Disability Insurance Scheme (NDIS) Review on the capability of the NDIS workforce

to meet the needs of First Nations people with disability.

Drawing on the findings from recent community consultations, in combination with

previous FPDN papers and broader evidence about the experiences of First Nations

people with disability with the NDIS, this submission outlines the following

recommendations for action:

Recommendation 1 - Grow the First Nations-led, disability sector workforce

(existing and new), and across urban, regional and remote areas and focussing on community controlled organisations. It also includes supply and -demand mapping, defining the specific areas of workforce where growth is required and identifying First Nations positions across the sector; defining key skill sets and skill pathways for NDIS workforce including disability support workers, kinship care roles, allied health professionals, coordination roles. Develop actions to address challenges, for example: increased security in employment contracts; adequate and competitive remuneration for disability sector workers; accommodation support for workers in regional and remote areas; e-learning opportunities for staff. This recommendation could build on FPDN’s workforce development activities under the Disability Sector Strengthening Plan to expand its approach to have a specific NDIS focus.

Recommendation 2 - Strengthen investment in a permanent, highly skilled and

nationally credentialed sustainable culturally safe and inclusive, disability rights informed First Nations workforce. This includes developing a training and education strategy that identifies pathways into the sector and to increase career pathways for new and existing workforce, with a focus on kinship carers and people with disability; regional and remote focus; including:

on the job training and nationally accredited training
longer-term career pathway training
development opportunities for progression and variety across multiple sectors (integrated care workforce)

multiple levels of entry points into the sector
tertiary pathways
mentoring, leadership and stewardship models.

Recommendation 3 – Amend NDIS policy to allow for the recognition and remuneration of the informal workforce that already exists in First Nations communities, particularly in rural and remote areas. This should include amending the NDIS prohibition on using family as support staff for First Nations people.

Recommendation 4 – Develop a dedicated location-based First Nations navigator role within the NDIA to undertake coordination and referral pathway role into the NDIS.

Recommendation 5 - Improve and maintain quality of non-Indigenous sector workforce to be culturally safe and inclusive, and disability rights informed. Require the NDIA and NDIS Quality and Safeguards Commission and NDIS registered providers to undertake NDIS specific Cultural Model of Inclusion Framework and Organisational Tool (self-assessment organisational monitoring tool) and capability development activities. The organisational competencies be incorporated into accountability frameworks (such as the registration process) and that quality standards. An intermediary or independent mechanism to be established to monitor implementation.

Recommendation 6 – Pending future changes to the NDIS registration processes, a minimum standard of culturally safe and inclusive, disability rights informed services should be incorporated across all providers.

Recommendation 7 - Enhance supply and demand workforce data in alignment with data improvement plans to enable more flexible use of the workforce. This can be aligned to Integrated Care Commissioning model pilots.

Recommendation 8 – Enhance supply and demand data of community controlled and Indigenous-owned registered NDIS providers.

Recommendation 9

Invest in a targeted communication and information campaign to build understanding of the NDIS across regional and remote mainstream service systems (such as GPs)

Recommendation 10

Build community awareness and understanding of the NDIS via culturally relevant and accessible communication methods.

Informing Aboriginal people with disabilities, their families and communities about their rights and entitlements under the NDIS and how to work with the system is essential. This must be done via communication methods that are accessible and a workforce that is competent in providing disability and culturally relevant information.

For First Nations people living in rural, regional remote communities, there is no other effective way to do this than on the ground, face-to-face.

Introduction

The National Disability Insurance Scheme (NDIS) is currently undergoing a major review to examine the design, operations and sustainability of the NDIS.

The Review is looking at ways to make the market and workforce more responsive, supportive and sustainable.

In June and July of 2023, FPDN conducted consultations with First Peoples with disability, their families, communities and support organisations, to inform our NDIS Review submissions. These consultations involved individual and community meetings in the Kimberly region, including in Mowanjum, Broome, Fitzroy Crossing, Bidyadanga and the Peninsular communities of Lombadina and Beagle Bay; as well as a national online survey of FPDN members.

As of mid-August 2023, the community consultations have engaged 49 First Nations people and 34 organisations; while the survey has been completed by 22 First Nations people and five others.

In line with the terms of reference (TOR) of the NDIS Review, a number of themes emerged in the consultations related to the suitability, responsiveness and sustainability of the NDIS workforce for First Nations communities.

Drawing on feedback and anecdotes from these consultations, this submission highlights the areas where the current NDIS workforce is failing First Nations communities and provides recommendations for improvements.

Throughout the submission, de-identified summaries are provided of First Nations people’s experiences with the NDIS. Direct quotes from the FPDN NDIS Review survey are also incorporated.

2. The NDIS as key to fulfilling Australia’s obligations to First

Nations people under the UNCRPD

The NDIS was first implemented through the National Disability Insurance Scheme

Act 2013 (the “NDIS Act”) in 2013 as the first nationally coordinated attempt to

address the rights and support needs of people with disability.

Under the NDIS Act, a key principle of the NDIS is that people with disability have a

right to the supports they need to participate on an equal basis in all areas of social,

economic and cultural life. To this end, the NDIS, when viewed in conjunction with

other legislative and policy frameworks such as the Disability Discrimination Act

1992 and the Australian Disability Strategy (ADS), has been praised both within

Australia and internationally as a means to implement the United Convention on the

Rights of Persons with Disabilities (UNCRPD) in practice.

Under the NDIS Act and in line with Australia’s obligations under the United

Convention on the Rights of Persons with Disabilities (UNCRPD), it is stated, among

a number of other objectives, the NDIS aims to ensure that people with disability

have access to high quality and innovative supports that support their full societal

participation and to ensure that people with disability are able to exercise choice and

control in the planning and delivery of their supports. However, as will be outlined in

this submission, these objectives, and in turn, Australia’s UNCRPD obligations, are

not currently being fulfilled for First Nations peoples.

While there is currently no international convention on the rights of indigenous

peoples, FPDN draws the attention of the NDIS Review to the United Nations

Declaration on the Rights of Indigenous Peoples (UNDRIP), to which Australia is

also a signatory as well as to the United Nations Committee on the Rights of

Persons with Disabilities (the UN Committee) 2019 Concluding Observations on the

combined second and third periodic reports of Australia, which highlighted the

difficulties faced by First Nations people with disability in accessing accessible and
appropriate services through the NDIS .5

5 CRPD/C/AUS/2–3, Adopted by the UN Committee at its twenty-second session (26 August–20 September 2019), Advanced Unedited Version, 23 September 2019. 12

Key Workforce Issues

Across the sector, it is well known that First Nations people with disability face significant barriers to accessing the NDIS. Despite making up more than one-quarter (24.0% or 139,700 people) of the First Nations population, 6 First Nations peoples with disability account for just over 40 000 NDIS participants, 7 and experience significant barriers to accessing accessible and culturally appropriate services, even within the NDIS system.

In previous reports and submissions, FPDN has highlighted a number of NDIS workforce issues that disadvantage First Nations people access when accessing or attempting to access the NDIS; 8 many of which were reflected in FPDN’s recent NDIS Review consultations.

Information and communication failures

One major issue that has previously been reported is a lack of understanding and knowledge about the NDIS among First Nations communities. In the FPDN NDIS Review consultations in the Kimberly region, it was evident that many individual participants, their families and support people did not know how to access the NDIS, what supports NDIS access could facilitate or how NDIS funding could be utilised.

Concerningly, this knowledge gap was also reflected in consultations with organisations and practitioners. In Mowunjam, Broome and the Peninsular Communities for instance, it was noted that local General Practitioners, medical staff and services had limited or no knowledge about the NDIS system.

Across the community consultations as well as the survey, participants also cited experiencing a number of issues communicating with the NDIS related to language barriers, geographical and cultural differences.

“If I was able to call a 1800 number that I could speak with a First Nations person I would like a First Nations planner - female I would like staff that I deal with have cultural capability and trauma informed practice I should be offered meetings in the locations and formats that suit my needs NDIS resources should be available in First Nations languages (in voice format).”

  "There was no one who would help me without making me feel stupid." 
   
   "My culture wasn't considered in either applications (I've made 2)."

“I wish it was made more clear about who can and can’t receive NDIS. I was made to believe I would easily access NDIS, but was denied twice. First time I was told I didn’t give enough information, and on the second try I was told I didn’t qualify, despite being physically and psychosocially disabled. I was told I had to be on treatment for 3 years before I could receive NDIS.”

b. ‘Thin Markets:’ Lack of disability supports in remote areas

It is well known that with the introduction of the NDIS, disability service provision moved towards a market-based system, with disability supports being provided through businesses which are pivoted toward profit from the funding made available through individual NDIS participants. While this system, it has been argued, provides more choice and control to individuals about the services they access,9 the opposite is true in rural, regional and remote locations, where populations are more sparse and in turn, services are limited.

In the Kimberly region consultations for instance, participants explained that services were so limited that they would often go days or weeks without access to basic assistance, such as assistance with showering or buying perishable items. In order to fill these support gaps, participants described having to rely on family members (who are ineligible for financial compensation under NDIS legislation) which they said, put pressure on their relationships.

9 Tune, D (2019) Review of the National Disability Insurance Scheme 2013: Removing Red Tape and Implementing the NDIS Participant Service Guarantee, prepared for the Australian Government, Canberra, accessed 11 August 2023, p. 27. 14

Inconsistent Service Provision

b. Lack of consistent presence at community events and forums

In many cases, these communities also relied on ‘fly in – fly out’ (FIFO) services, which lacked adequate understanding of individuals and communities, and were present at inconsistent interims.

c. A culturally incompetent workforce

When services are available to First Nations communities, they often lack understanding of cultural differences and do not have the competency to provide services that are accessible, appropriate and trauma-informed. Across all of the Kimberly region consultations, this issue was significant, with participants explaining that services and support workers lacked cultural awareness and that they would do things or ask questions that were offensive or irrelevant.

The survey responses similarly indicated that a lack of cultural competence among the NDIS workforce greatly impacted the experiences of First Nations participants. In a question about whether participants felt culturally safe in NDIS interactions, an overwhelming 66.7% said ‘no’ and when asked about what the NDIS should know, a number of participants described a need for a culturally competent workforce.

“I have had issues with racism and discrimination from service providers. It has been almost impossible to find culturally safe supports in my region.”

“Including cultural awareness competency a requirement for services to deliver services.”

“Need to develop a workforce that is culturally aware.”

“NDIS should consider directly funding organisations to provide cultural pairing - First Nations workers who work with non-Indigenous workers to provide supports NDIS should make sure that all non-Indigenous service providers have a cultural framework and trauma informed practice underpinning their service provision or they cannot register to provide services under NDIS.”

“In the 8 years, I’ve been working within access and planning meetings. I have not have come across many planners that have an understanding of ATSI people and the culture. Improving this or specifically having ATSI planners would be more”

appropriate. Not swapping planners for people to explain their story every year, and

                  having one planner per household.”

In another question about what could be done to make the NDIS culturally safer, one participant also spoke about a need for gender-sensitive and trauma-informed services.

“I believe the NDIS should have a section for cultural funding so that I can participate in cultural events, or host events like this themselves (unaware if they do, and if so it’s not accessible).I believe there should be more education around cultural awareness and especially the topic of mens and womens business. I live in disability accommodation through NDIS with staff on site 24/7 and multiple times I have had male staff come into my house without properly announcing themselves or being welcomed in, even coming right to my bedroom door before making themselves announced. As a woman this makes me very uncomfortable and as if they have no cultural awareness of womens business. Also this past NAIDOC week they put a lot of pressure on me as the only Indigenous client to come up with NAIDOC week events for the rest of the clients/ neighbours in the program. I felt I was pressured to do this, and it’s the only time they’ve embraced my culture or asked questions or been interested when I do speak of my culture. I do not believe there is informative enough content on caring for Indigenous clients or building cultural awareness in their one unit, if that, when they study to become a support worker. I have also struggled to find Indigenous support workers. I wish they would embrace my culture more than one week a year, like mentioned before there should be extra support including funding to actually participate in cultural events and activities, because I believe culture is very closely related to mental health, and in our culture our traditions are focused on healing. There should be more NDIS funded events celebrating our culture and allowing us to build connection to ourselves and our identities and to land and culture, which is one of the biggest strengths we have. This would help to heal inter-generational trauma as well. Also being able to recognise the NDIS as an ally because of their continuous effort in supporting the indigenous community and helping to host or fund these events would bring a lot more cultural safety and trust.”

In this context, it is important to recognise that First Nations people with disability, in

particular, those who are women and girls, face disproportionately high rates of violence, abuse, neglect and exploitation, including from within government and private sector service systems,10 and therefore, need services they access to be trauma-informed and sensitive to their experiences.

d. Lack of Aboriginal and Torres Strait Islander staff and services

Related to there being a lack of culturally competent support staff and services available to support First Nations communities, many consultation participants identified a need for more First Nations support staff and services that are led by First Nations people. In response to the survey question about what would improve the cultural safety of the NDIS for instance, participants said:

“Aboriginal workers, an understanding of what disability means in Aboriginal context.”

“Having a local aboriginal staff member either with the partners or NDIS for Client’s to feel connected to.”

Notably, the survey and community consultations highlighted how a lack of culturally competent and First Nations disability services and support staff available through, or even outside the NDIS, meant that First Nations people with disability had to heavily rely on family networks, but were concerned that this was not being appropriate recognised by the NDIS.

“NDIS plan need to be more flexible to consider kinship caring models NDIS need to think about more respite particularly for people when transitioning from custodial

Conclusion and Recommendations

When combined with already existing knowledge about the barriers that First Nations people face accessing the NDIS and the disability service system, it is evident from FPDN’s NDIS Review consultations that drastic changes are needed to ensure that Australia is fulfilling its UNCRPD obligations.

Among other issues, the consultations highlighted a number of significant areas where the NDIS and disability service sector workforce is falling short of meeting the needs of First Nations disabled community.

Drawing on our previously developed Ten Point Plan for the Implementation of the NDIS in Aboriginal and Torres Strait Islander communities, (which was originally launched in 2013, but a decade later, remains relevant) FPDN urges the NDIS Review to consider the following recommendations for urgent implementation:

Recommendation 1 – Build community awareness and understanding of the NDIS via culturally relevant and accessible communication methods.