NDIS participant experience in rural, regional and remote areas

Submission 85 - Attachment

O s e e t 2023

h r e s S o S

F P D N report to the Independent Review of the NDIS — Crisis Responses.

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.

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Table of Contents

• August 2023 Acknowledgements 2 About FPDN 4

1. Executive Summary 5

2. Recommendations 5

3. Discussion 5

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About FPN

The First Peoples Disability Network (FPD) 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.

FPD 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. FPD 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. FPD 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. To do this, we proactively engage with communities around the country, influence public policy and advocate for the interests of First Peoples with disability in Australia and internationally.

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.

FPD 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

First Nations people with disabilities face potential crisis most days of their lives, this

is a result of systemic marginalisation due to the intersecting factors of racism, ableism, disability poverty and geographic inequity.

This compounded disadvantage means that First Nations peoples with disability are

often pushed to the fringes of cities, townships and settlements1. Places that are

poorly serviced by infrastructure and/or are places that have high chances of nexperiencing extreme climate crisis events such as floods and fires2.

Marginalisation creates crisis situations whether it be the location of habitation or

denial of access to infrastructure, supports and services. Thin markets are an ongoing part of daily life for First Nations peoples – and have been so for decades3.

When you live in a place that is poorly serviced anything can becomes a crisis whether it’s a broken wheelchair that will take weeks or months to repair, a collapse in primary infrastructure that prevents vital provisions from being transported, a fire, flood, public health emergency, direct or indirect homelessness or a family breakdown.

The Independent Review into the NDIS has an opportunity to not only reboot the scheme but to also embed mechanisms within the entire scheme to ensure not just imely responses to crisis but holistic culturally safe practices – practices that will benefit not only First Nations people with disabilities but all people with disabilities.

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The NDIS is a world first initiative, and it now has the opportunity to extend equity of access to supports and services to the most marginalised people with disability in the country. This is a rare opportunity to actively bring forward the principles of Reconciliation as articulated by the Uluru Statement of the Heart4 and which are also reflected in FPDN’s Ten Point Plan to address disability inequity5.

These priorities are intended to form the foundation for a comprehensive national plan collaboratively created to ensure that the services and supports provided to Aboriginal and Torres Strait Islander people are disability accessible, culturally appropriate and will work in Aboriginal and Torres Strait Islander communities. This can be achieved by adopting a whole of community approach.

FPDN recommends that the Independent Review Panel seriously consider and preferably include the FPDN’s Ten Point Plan and the following recommendations in the Reviews final report.

Recommendations

Recommendation 1

NDIA to develop policies and processes to respond to crisis including information and referral to be pro-active and not reactive. During this process, First Nations led definitions of what is ‘crisis’ for the purpose of NDIS. This is to include a specific remote and very-remote definition.

Recommendation 2 – Establish a dedicated 1800 First Nations NDIS Inquiry and assistance line. The Hotline will need to be able to engage with diverse communities and in multiple languages and / or have access to translators in a range of First Nation languages. A dedicated communications campaign should be developed to disseminate this line to communities.

Recommendation 3 Ensure national and jurisdiction policies are in line with Article 11 of the CRPD, all four priorities within the SENDAI framework for Disaster Risk Reduction (DRR) and other obligations under the Sustainable Development Goals

Recommendation

Recommendations

• (SDG) and other relevant national and international policies and treaties. This includes providing Disability Representative Organisations/Peak organisations funding to contribute to DRR and SDG implementation.

• In major disaster events the Australian Defence Force and/or “Crisis Responders” to be deployed with First Nations and disability specialist teams.

• Commonwealth and Jurisdiction Disaster Recovery and the NDIA policy, program and frontline teams to undertake specific crisis focussed cultural model of inclusion training together. FPDN to be resourced to design and implement this targeted crisis training building on their Cultural Model of Inclusion capability framework.

• Funding in NDIS plans that participants could access during times of crisis without the need for a full review. Including for emergency accommodation and additional funds for supports such as assistance animals and other aids and equipment.

• During situations of risk and emergencies ensure flexibility that allows participants and their families access to plans and plan information even if there is a loss of ID and other information.

• Ensure that review timeframes can be put on hold during crisis/emergency

Discussion

The marginalisation and systemic disadvantage experienced by First Nations peoples including people with disability is well known and well documented6. Closing the Gap is but one part of the required measures to address chronic First Nations disadvantage in terms of the social determinants of health. However, Closing the Gap cannot be the only mechanism to address inequity. The NDIS has a role to play in not only ensuring supports and services are accessible but that they are accessible regardless of the situation – which may be a crisis situation. Additionally,

6 https://www.pc.gov.au/ongoing/overcoming-indigenous-disadvantage

Embedding Culturally Safe Practices

supports and services must de delivered in a culturally appropriate manner. Service

provision must take a whole of community approach and it must be developed with

First Nations peoples.

Embedding proactive rather than reactive mechanisms within the Agency means that

provision of services will not only be timely, but they will be respectful and culturally

safe.

In recent times acknowledgement of First Nations holistic community practices in

maintaining country and community have started to be included in the management

practices of large agencies7. There is ample evidence that shows taking holistic First

Nations practices inside Australian organisations (such as schools) elicits better

cultural awareness and therefore better service provision.8

First Nations people with disability need service providers that are culturally safe, that do not merely take a “tick box” approach to First Nations specific service provision; but rather have providers that are fully engaged and committed to providing supports and services that are genuinely aligned with the needs and requirements of any given First Nations community - as per the FPDN Ten Point Plan.

This includes the Agency itself, that is, that the NDIA seriously embeds culturally safe practices in all aspects of the Agency’s work – from frontline staff to the CEO level.

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 men’s and women’s 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 women’s business. Also, this past NAIDOC week

e 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. 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. – FPDN advocacy client

We saw how the Agency responded to the Covid crisis and it was a response that was delayed and caused much distress. Overnight First Nations disabled people were left without supports and services and in some cases even food! It took too long for the Agency to implement mechanisms to ensure disabled people were not left hanging in need. This is a reactive and disorganised response and not at all culturally appropriate. The Disability Royal Commission recognised this as a serious matter and examined it in detail. The conclusion being that responses should have been considerably better considered and managed.

To be able to call a 1800 number that I could speak with a First Nations person and I would like a First Nations planner - female I would like staff that I deal with have to 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). FPDN advocacy client

The Agency needs to develop and embed proactive responses to crisis situations.

Plans could include pre-approved funds inside packages, specifically to be accessed in crisis situations.

Having pre-approved funds means that a person experiencing a crisis situation knows they can access specific supports and services and not worry about the process or need to provide extra paperwork.

Such pre-approved funds could be identified in plans as emergency crisis funds to be unlocked on such occasions.

Additionally, the Agency should develop a role for “crisis responders” these staff would act like emergency support co-ordinators or connectors and be deployed into areas where a major crisis event has occurred – to ensure disabled people are appropriately supported and not left in potentially life-threatening situations e.g., being stranded in your home as it floods.

These Crisis Responders would work alongside other interagency responders to ensure that people with disabilities receive continuity of supports and services. A dedicated 1800 First Nations Helpline as suggested above would provide a culturally safe and secure service for First Nations people in crisis.

Proactive mechanisms embedded inside the Agency will delivers better person-centred culturally safe responses rather than insensitive bureaucratic responses that leave people, especially First Nations people with disability distressed, anxious, culturally isolated and left at possible harm.