Disability Advocacy Network Australia
2024

Submission

A strong foundation for building ‘Foundational Supports’

Expanding information and capacity building activities through the independent disability advocacy sector

December 2024

About DANA

DANA is the national representative body for a network of independent disability advocacy organisations throughout Australia.

Our Vision

DANA’s vision is of a nation that includes and values people with disabilities and respects human rights for all.

Our Purpose

DANA’s purpose is to strengthen, support and provide a collective voice for independent disability advocacy organisations across Australia that advocates for and with people with disability.

We achieve this by:

promoting the role and value of independent disability advocacy
providing a collective voice for our members
providing communication and information sharing between disability advocacy organisations
providing support and development for members, staff and volunteers of disability advocacy organisations
building the evidence base to demonstrate the value of disability advocacy
promoting the human rights, needs, value and diversity of people with disabilities

Contact:
El Gibbs, Deputy CEO

Email: el.gibbs@dana.org.au

About DANA ……………………………………………………………………………………………………………. 2
List of recommendations …………………………………………………………………………………………… 4
Part 1: Addressing a widening gap for people with disability ………………………………………….. 6
Six months to swiftly establish a new system of crucial supports ………………………………… 6
Growing need amidst rapid reforms ………………………………………………………………………… 7
Advocacy funding cliff ……………………………………………………………………………………………. 8
A bridge to Foundational Supports ………………………………………………………………………….. 9
Part 2: Strengthening the advocacy sector as a bedrock to Foundational Supports ……….. 11
Trusted local experts in delivering information, advice and referral ……………………………. 12
Leaders in building skills, capacity and connectedness of individuals and communities .. 13
Immediate resourcing for disability advocacy organisations to map and monitor …………. 14
Phase 1: Preliminary service and support mapping (until end of June 2025) ……………. 14
Phase 2: Partners in change delivering on-the-ground impact feedback (July 2026 onwards) ………………………………………………………………………………………………………… 15
Part 3: Long-term funding of advocacy and its relationship to Foundational Supports ……… 16
Increase capacity, continuity and security ………………………………………………………………. 17
Preserve diversity, flexibility and responsiveness ……………………………………………………. 19
Preserve independence and strengthen management of potential conflicts ………………… 21
Part 4: Key components for a system of general Foundational Supports ……………………….. 22
Guarantee supports are available at no cost …………………………………………………………… 23
Start with the gap in assistive technology access ……………………………………………………. 24
Establish pathways between systems and fund assessments …………………………………… 25
Establish Community Inclusion Hubs …………………………………………………………………….. 27

List of recommendations

Funding advocacy organisations

Recommendation 1: That state, territory and Commonwealth governments immediately invest in interim funding to disability advocacy and representative organisations to meet existing needs of people with disability and families for information, peer support, capacity building and self-advocacy.

Recommendation 2: That this interim funding be for at least 18 months to 1 July 2026.

Recommendation 3: That this interim funding be extended beyond this 18 month period if Foundational Supports have not yet been established.

Recommendation 4: That this interim funding be in addition to other multiple funding increases for existing programs, including advocacy.

Recommendation 5: That the total amount of interim funding to be invested across all disability advocacy and representative organisations should be at least 10 percent of the national budgeted expenditure of $5b per year on Foundational Supports.1

Recommendation 6: That the interim funding should include:

New funding to continue current ILC funding for existing programs due to cease on 30 June 2025;
New funding for peer support and capacity building programs that previously received Information Linkages and Capacity Building funding, and did not receive ILC or NDIA grants in 2024;
Increased funding for existing information, peer support and capacity building programs to begin delivering expanded supports from 1 July 2025;
New funding for innovation in peer support and capacity building to support the development of new initiatives and approaches.

Recommendation 7: That, in the case of delays in the co-design and roll-out timeline, governments guarantee the entirety of initial funding commitments of up to $5 billion per year over 5 years (as agreed by National Cabinet) are invested in aiding successful transition and implementation of Foundational Supports.

Recommendation 8: That the Federal Government invests $3 million in the Foundational Supports Mapping Project to inform the transition from ILC to Foundational Supports.

1 Approximately $400-500 million, as the combined expenditure of Federal and State and Territory governments’ joint contributions will total $4 to 5 billion, annually.

Recommendation 9: That the Federal Government invests $5 million over 5 years in a Foundational Supports Oversight Council as a key mechanism to provide disability leadership and expertise during the Foundational Supports implementation process.

Funding disability advocacy in parallel with Foundational Supports

Recommendation 10: That independent disability advocacy organisations receive continued funding at the increased level promised in the Disability Royal Commission response, along with an increase to meet unmet demand.

Recommendation 11: That disability advocacy remains separately funded from Foundational Support activities to preserve its strong ethos of being solely on the side of the person or people with disability.

Recommendation 12: That distribution of funding between jurisdictions takes into account higher levels of need:

in South Australia (due to lack of state government advocacy funding).
for organisations operating in regional, rural, remote and very remote areas.
among First Nations communities to develop culturally safe and responsive advocacy, (in consultation with First Peoples Disability Network)
among organisations that work with people who need support for decision making
among other organisations that work with multiply marginalised people with disability

Recommendation 13: That advocacy funding arrangements and reporting structures allow flexible advocacy delivery.

Recommendation 14: That NCDA be funded to co-design guidelines and a toolkit to assist in managing conflicts of interest in Foundational Supports delivery.

Other needed components

Recommendation 15: That Foundational Supports be available at no cost, with minimal eligibility requirements and without means testing.

Recommendation 16: That a disability aids and equipment scheme be established, with a starting fund of $15 million to identify, measure and begin addressing the needs of people with disability outside the NDIS.

Recommendation 17: That a $17.5 million referral program for disability diagnosis and assessment be established.

Recommendation 18: That the introduction of a $22.5 million Community Inclusion Hubs program be piloted as a Foundational Support.

Part 1: Addressing a widening gap for people with disability

People with disability, their families, supporters and independent disability advocates have been through very significant change over the last few years, including the NDIS Review and the Disability Royal Commission.

Advocates have worked alongside many people with disability to support them as essential NDIS supports are suddenly shifted with little to no notice, all while working with state, territory and commonwealth governments to engage on the future of a wider disability support system.

Both the Disability Royal Commission and the NDIS Review found that many people with disability have barriers to accessing mainstream services, such as education, health, justice and transport. Many come to disability advocacy organisations for assistance in being included in the community through the local school, hospital, court system or bus service. Advocates work with people with disability to find solutions, to help to understand their rights, and to engage with mainstream services to ensure the equal treatment of people with disability.

The NDIS Review recommended the implementation of Foundational Supports to address some of the gaps in services and supports, and in December 2023, National Cabinet agreed to jointly fund and deliver long overdue additional support for people with disability and families, across key areas such as information, capacity building, peer support and advocacy.

The implementation of Foundational Supports brings critical opportunity to improve the lives of people with disability – particularly the 88% of people with disability who are not on the NDIS – but there is inherent risk to people with disability if the transition is not adequately resourced and if existing supports – including Foundational Supports-aligned projects funded under current Information, Linkages and Capacity Building (ILC) funding rounds – are not resourced to survive the transition.

Six months to swiftly establish a new system of crucial supports

Public consultation on Foundational Supports has just finished, and the lack of clarity and context around the consultation has posed significant challenges for people with disability to meaningfully engage. Gaps in supports are progressively widening with the changes to eligibility, access and planning for the NDIS, new definitions of NDIS supports and excluded supports. This has happened following changes to ILC grant funding availability resulting from the latest round. The full landscape of reform activities is vast, and the impacts are already being felt by people with disability and independent disability advocates.

We have significant concerns about the feasibility of the current planned timeline for the delivery of Foundational Supports, and believe they are unlikely to be in place until 1 July

2026 at the earliest. This will create a significant gap for people with disability in available essential services.

DANA, alongside other Disability Representative Organisations (DROs), has repeatedly stated that the continuation of access to support for people with disability is necessary and non-negotiable, and our support for any reforms are contingent on continuity of supports, and no person with disability being left without supports. We reiterate our concerns that current reform timelines post a major risk of both raising the costs of the NDIS, and shut people with disability out of vital support.²

What is going to happen to hundreds of thousands of people with disability now, on 1 July 2025, and beyond? We know that people with disability are already significantly struggling with the changes, and the existing gaps in services and supports. That gap will widen, and more people with disability will fall through, if there is not immediate action to address this.

Growing need amidst rapid reforms

After the ‘Getting the NDIS Back on Track No 1 Amendment’ passed in August, the framework for a very significant restructuring of how the NDIS will operate is now in place.

The NDIS can now draw lines around what will be available through the Scheme and what will be available through Foundational Supports through the new definition of ‘NDIS Supports.’⁴ A temporary, very problematic set of lists for this definition have removed supports from the Scheme before Foundational Supports are available.⁵ A finalised version of that definition developed with the states and territories is due next year. A completely new way of building plans — where people have a budget to draw from based on a needs assessment — is also expected to rollout from mid-next year.⁶ Many of these changes will assume that Foundational Supports are available when they won’t be.

The lack of capacity to stand up new Foundational Supports from 1 July 2025 is clear, and yet there is no plan for the people with disability who will need additional disability support, particularly those removed from NDIS supports. Key cohort groups who will particularly need and benefit from Foundational Supports include:

² Australian Federation of Disability Organisations, Children and Young People with Disability, Disability Advocacy Network Australia, et al ‘NDIS change must be led by people with disability — Joint media statement’ Disability Advocacy Network Australia (online, 7/12/2023): <https://www.dana.org.au/ndis-review-joint-media-statement/>; DANA, Submission Section 10 — draft lists of NDIS Supports (August 2024), <https://www.dana.org.au/wp-content/uploads/2024/08/NDIS-Supports-draft-lists-DANA-Submission-2024-Final-240820.pdf>

³ DANA, National Disability Insurance Scheme Amendment (Getting the NDIS Back on Track No.1) Bill 2024 [Provisions], May 2024, https://www.dana.org.au/wp-content/uploads/2024/05/DANA-Submission-on-NDIS-Bill.pdf

⁴ National Disability Insurance Scheme Act 2013, s 10; National Disability Insurance Scheme (Getting the NDIS back on Track No. 1) (NDIS Supports) Transitional Rules 2024

⁵ DANA, ‘Section 10 Draft lists of NDIS Supports’ August 2024 https://www.dana.org.au/wp-content/uploads/2024/08/NDIS-Supports-draft-lists-DANA-Submission-2024-Final-240820.pdf

⁶ Department of Social Services, ‘Disability Reform Roadmap’ September 2024 https://www.dss.gov.au/system/files/resources/final-publication-disability-reform-roadmap-ac.pdf

People with disability who are currently undergoing, or will be undergoing, the NDIS eligibility reassessment process and may leave the Scheme entirely;
People with disability on the NDIS who have their supports budgets cut or changed;
People with disability on the NDIS who have additional, non-NDIS funded disability needs;
Children exiting the Scheme after being found ineligible for ongoing NDIS support due to aging out of the ECEI (Early Childhood Early Intervention) pathway;
People with disability who are ineligible for the NDIS but need significant support; and
People with disability who may be eligible for the NDIS but are unable to apply or gain access.

Each of these groups of people with disability may have to rely on other services and supports, such as health and education in order to meet their needs if there is no plan to deliver a bridge to Foundational Supports.

Advocacy funding cliff

There is also uncertainty given there have been no clear indications regarding advocacy funding. In one of the few substantial announcements from the Federal Government’s Disability Royal Commission response, advocacy is due to receive approximately $40 million for a streamlined ‘individual advocacy program’. Given it is now December 2024, and current funding agreements are set to expire in June 2025, there is a strong likelihood that advocacy funding will be extended/rolled over to allow for collaboration on a new iteration of the National Disability Advocacy Framework 2023-2025 and consultation and decision-making about federal and state program design and funding allocations. We are still awaiting the detail of the increased funding announced in response the Royal Commission, and how this will be distributed among existing advocacy organisations. This uncertainty for the sector will continue to drive a loss of capabilities and expertise from its workforce, at a time when people with disability will be contacting organisations for help, advice and problem-solving approaches more than ever:

*“…at the moment for the advocacy organisation I am in, our funding grant is up for review in July 2025, and many advocates are working on the assumption that our program may not be funded again, so to have a back-up plan in case that transpires i.e. looking for other jobs. Some staff members have already left in the lead-up. This is obviously very stressful.”*⁷

This submission explains how the existing work of advocacy organisations is foundational to many of the intended outcomes of a Foundational Supports strategy and argues that governments can leverage the extensive expertise and important qualities of these existing funding structures and networks to invest and swiftly begin to deliver on the promise of improved and expanded disability information, advice and referral and capacity building that more effectively meets the needs of Australians with disability.

⁷ SA advocate, survey response on Foundational Supports and advocacy, November 2024.

A bridge to Foundational Supports

An urgent approach is needed to ensure people with disability can maintain access to vital information and capacity building supports during the transition period and ensure that Foundational Supports in their maturity are accessible, fit for purpose and led by people with disability.

In addition to their role as independent advocacy organisations, DANA believes that our members and other disability-led organisations, who are already delivering Foundational Support-type services, could deliver a bridge to the full roll out of Foundational Supports. This would ensure that people with disability would have known, local interim services that they trust and recognise, instead of possibly nothing at all.

Independent disability advocacy organisations are located across Australia, reaching into every part of the continent and serving a wide range of people with disability, including those who are the most marginalised. There are a range of grass-roots rights-focused organisations that (like advocacy organisations) also guide activities such as peer support, supported decision making, leadership and representation for people with disability. These organisations are people-centred and people-powered and often disability-led or governed and can therefore be incredibly responsive to needs of the local communities they have grown up from.

DANA’s consultation with advocates for the NDIS Review confirmed that advocates are already carrying the burden of gaps in support due to a decade of no investment in services and supports outside the NDIS. One of the biggest service gaps identified was a lack of accessible information and awareness of available mainstream supports. This is alongside the compounding gap in the availability of mainstream services available for people with disability, particularly mental health and housing supports, including costs and long wait times for services.⁸

With the looming widening gap in services, planning to ensure that people with disability do not fall through the gaps must be an urgent consideration for all governments.

*“As [Foundational Supports] is a critical new expansion of disability supports to fill the many gaps left by the NDIS, it is essential that the expansion incorporates provision for a linked expansion in independent disability advocacy.”*⁹

⁸ DANA, Summary Report NDIS Review: Mainstream and Tier 2 - Rethinking ‘Tier 2’ of the NDIS: Investing in real inclusion of people with disability. (2023) https://www.ndisreview.gov.au/sites/default/files/2023-11/DANA_Summary_Report_Mainstream_and_Tier_2.pdf

⁹ VIC advocate, Comments on DANA Issues paper on Foundational Supports and disability advocacy. November 2024.

Disactivity advocacy organisations are well placed to provide accessible information, peer support and capacity building and have already been delivering it alongside and adjacent to their core work of advocating for people with disability. There is an existing reliance on advocacy organisations to assist them navigate complex and disconnected systems.¹⁰

The disability advocacy sector can serve as a strong foundation from which to expand information, peer support and capacity building supports that are rights focused, community driven, locally responsive and disability-led.

As the timeline for implementing Foundational Supports is highly likely to be extended, we believe that increasing funding for advocacy organisations to continue and expand upon their existing programs will be vital to ensure people with disability have trusted, reliable, local services to draw on. In order to do this, both adequate time and significant resourcing is vital. Resourcing must span multiple funding programs in order to be effective.

DANA proposes governments invest immediately in bridge funding for 18 months to continue and expand supports while the design of Foundational Supports is settled, and a commissioning framework are developed and implemented. A significant proportion of funding allocated to provide Foundational Supports must flow to advocacy and representative organisations who wish to maintain and build on existing work and innovate new activities and approaches for the delivery of accessible place-based information and capacity building. The recognition of advocacy organisations as experts in delivering trusted information and capacity building is long past due and must be addressed by proper resourcing and certainty of funding. The system currently relies on advocacy to shoulder the burden of system failures, including to fill support gaps, help people navigate disconnected systems, educate providers and address unsafe situations.

At least 10% of the joint funding allocated to Foundational Supports by Federal and State and Territory governments, which is $4-5bn annually, should be directed to advocacy and representative organisations who wish to apply to run ongoing programs under the umbrella of foundational supports. Only rights-focused and community driven-advocacy and representative organisations would be eligible to receive funding from this dedicated portion of the overall Foundational Supports budget. As explored in Part 3, this funding would be separate from existing funding arrangements for disability advocacy and representation.

¹⁰ DANA, Summary Report NDIS Review: Mainstream and Tier 2 - Rethinking ‘Tier 2’ of the NDIS: Investing in real inclusion of people with disability. (2023) https://www.ndisreview.gov.au/sites/default/files/2023-11/DANA_Summary_Report_Mainstream_and_Tier_2.pdf

Recommendation 2: That this interim funding be for at least 18 months to 1 July 2026.

Recommendation 3: That this interim funding be extended beyond this 18 month period if Foundational Supports have not yet been established,

Recommendation 4: That this interim funding be in addition to other multiple funding increases for existing programs, including advocacy.

Recommendation 6: That the interim funding should include:

New funding to continue current ILC funding for existing programs due to cease on 30 June 2025;
New funding for peer support and capacity building programs that previously received Information Linkages and Capacity Building funding, and did not receive ILC or NDIA grants in 2024;
Increased funding for existing information, peer support and capacity building programs to begin delivering expanded supports from 1 July 2025;
New funding for innovation in peer support and capacity building to support the development of new initiatives and approaches.

Part 2: Strengthening the advocacy sector as a bedrock to Foundational Supports

There is strength and responsiveness in the diversity, and community-driven and place based nature of many of the organisations funded to provide disability advocacy. As advocates have routinely said about their communities:

“Every area has its own culture and way of doing things and it is vital that organisations know what this is. We see a number of city-based organisations with contracts for country regions that are never serviced. People with disability want to

¹¹ Approximately $400-500 million, as the combined expenditure of Federal and State and Territory governments’ joint contributions will total $4 to 5 billion, annually.

see local people they know and trust deliver their services”.

“By being ‘place-based’ we are linked with organisations and services that provide services to our client group, which allows positive relationships at the service level, and so is helpful for assisting our clients. It also allows our services to be known by word of mouth, and so reach a wide client group.

*“The benefit is that we live in and know the community well, which means we have networks to reach out to some of the most vulnerable people in our community to help them by seeking an advocate to support and assist them.”*¹²

Trusted local experts in delivering information, advice and referral

Advocacy organisations regularly take on the largely unfunded work of creating, and disseminating accessible information resources about updates, and legislative and policy changes.¹³ Given their extensive expertise across these areas and grassroots relationships with their local communities, disability advocacy organisations will be instrumental in supporting a range of areas marked for reform by the Disability Royal Commission:

strengthening and embedding awareness and understanding of disability rights generally¹⁴ and in disability services,¹⁵ places of detention¹⁶, and health services;¹⁷
enabling remedies through the courts under the Disability Rights Act¹⁸);
contributing to oversight, safeguarding and human rights adherence across a range of services systems;¹⁹ and
providing independent information on available supports and options, including under consumer law.²⁰

As explored in our work for the NDIS Review:

There is extensive information online about services and activities open to people with disability, including dedicated resources and databases created and designed to help people with disability find services and support. However, details important to

¹² DANA
¹³ In relation to emergencies and health crises see: Elly Desmarchelier and DANA. (2023). NDIS Review: Fires, Floods and COVID-19—Discussion paper. Disability Advocacy Network Australia. Michelle Villeneuve. (2020). Clearing a path to full inclusion of people with disability in emergency management policy and practice in Australia. Centre for Disability Research and Policy. The University of Sydney.
¹⁴ Recommendation 4.21
¹⁵ Recommendation 10.1
¹⁶ Recommendation 8.2
¹⁷ Recommendation 6.31
¹⁸ Recommendation 4.20
¹⁹ See further Disability Advocacy Network Australia (2024) The Australian Government response to the Royal Commission into Violence, Abuse, Neglect and Exploitation. Disability Advocacy Network Australia (2023) A strong sustainable future: addressing capacity shortfalls for a strengthened disability advocacy sector.
²⁰ See Gerard Brody, (2023) Consumer policy response to NDIS Review “What we have heard” report | Disability Advocacy Network Australia (dana.org.au)

prospective service users - including costs, accessibility for particular needs, location, wait times, and eligibility for support or concessions - are missing, inaccurate or outdated in online databases and gateways. The time and effort involved in navigating and sifting the volume of information online can be overwhelming and frustrating.²¹

Though national hotlines can be very valuable for some people with disability to receive information over the phone and we have welcomed the development of the Disability Advocacy Support Helpline now accessible through the Disability Gateway, there are many people with disability needing support who need face-to-face engagement and/or interaction over some time to build relationships of familiarity and trust.

*“Regional and rural advocacy [organisations] have very strong connections and a hotline approach is not ideal. [People with disability] prefer to pick up the phone and speak with the person they already have a relationship with.”*²²

In the course of their work, disability advocacy organisations establish and cultivate strong relationships of trust in their community, working in a human rights framework to increase autonomy and defend the will and preference of the person with disability. This reputation as maintaining independence and separation from the market driven imperatives of the disability services sector means that many advocacy organisations are well situated to provide independent information, advice and referrals, without bias or conflicting motives.

Leaders in building skills, capacity and connectedness of individuals and communities

Many advocacy and/or disabled people’s organisations run peer support networks that empower people with disability. This may be in the form of self advocacy groups (see above) or through some other network or group focused on age, gender, disability type or other characteristic or interest. They may also include “self help” groups or local association networks focused on a particular disability type, health condition or diagnostic grouping. Such networks or communities of people with disability foster mutual support, personal growth and community involvement, and also facilitate education, information-sharing, and networking on the “grassroots level”.

Advocacy organisations have often engaged in proactive disability rights education and capacity building work in the community and in congregate or closed settings, but increasingly this outreach-type work has been limited by overstretched capacity and funding constraints, and by gatekeeping and lack of access into relevant premises. See DANA’s previous publications and submission for exploration of some of the ways advocacy organisations have led or supported building skills, relationships and networks, especially in

²¹ Sue Olney and DANA (2023). NDIS Review: Mainstream and Tier 2—Discussion paper for NDIS Review engagement. Disability Advocacy Network Australia.
²² 2022 consultation about advocacy – comment from VIC regional organisation

awareness and understanding of supported decision making, human rights, leadership development and participation in representative and advisory processes.²³

Immediate resourcing for disability advocacy organisations to map and monitor

The rollout of foundational supports — a reimagining of the Tier 2 landscape — creates an exciting opportunity to build the body of knowledge on what supports Australians with disability are using, needing, and where the key links to mainstream services and supports are. There is a critical need to understand the current operating environment in order to effectively evaluate the impact of future Foundational Supports investments. As such, there should be an immediate targeted investment into the non-NDIS service and support landscape, with a focus on the most marginalised people with disability, in the form of a citizen science mapping project. Dedicated investment into understanding what currently exists will create a strong foundation for the Foundational Supports rollout, as well as identifying potential targeted investments to address mainstream accessibility and inclusion to further increase the potential within the foundational supports landscape.

This work would begin as soon as possible in preparation for the beginning of Foundational Supports availability in July 2025, and encompasses two key phases:

Phase 1: Preliminary service and support mapping (until end of June 2025)

Since 2016, the Information, Linkages and Capacity Building (ILC) program, currently delivered by the Department of Social Services, has funded many projects that are aligned with the new definition of foundational supports. This has included dedicated funding rounds such as the National Information Program round that are strongly aligned with the intended focus of foundational supports.

Current investment across the ILC funding streams totals over $105 million for 2024-2025.²⁴ However, $50.3 million of this amount goes to organisations who have received a one year extension of projects commenced from previous grant rounds.²⁵ There is significant overlap with both proposed foundational supports and with self-advocacy, with one third of funded organisations funded to offer peer connection, support or networks, and just under one quarter of total funded organisations including self advocacy in their project description².²⁶

²³ Disability Advocacy Network Australia (2022) Rights, Safety, Quality — Voices of Advocacy. Kevin Stone and DANA (2023) Supported Decision Making — Advocates and supported decision making for people with disability - Discussion paper for NDIS Review engagement. Disability Advocacy Network Australia. Sue Olney and DANA (2023). NDIS Review: Mainstream and Tier 2—Discussion paper for NDIS Review engagement. Disability Advocacy Network Australia.
²⁴ Department of Social Services (2024). ICB 2024-25 Grant Round, available at: https://www.dss.gov.au/funding-disability-projects/icb-2024-25-grant-round; $90 million over 3 years. Department of Social Services (2024) Social and community participation round 2023-24 | Department of Social Services; $49.9 million over 2 years.
²⁵ Department of Social Services (2024) 1 year extensions totalling $50.3 million.
²⁶ Department of Social Services (2024). Information, Linkages and Capacity Building — Individual Capacity Building 2024-25 — Successful Applicants Available at: https://www.communitygrants.gov.au/sites/default/files/documents/2024-06/7976-successful-applicants.pdf

The level of aligned investment in the current ILC program indicates a strong need for identified foundational supports, including peer support, and that the funding amounts used in ILC must continue to be available for similar projects into the future. The proposed current environmental scan should include all current projects funded under active ILC funding rounds and extensions, with retrospective mapping of prior ILC offerings from 2016 onwards in order to identify ebbs and flows of non-NDIS disability support, while also identifying what extra investment is needed to ensure these supports are available to all people with disability. It should also include forward-looking analysis of impending ILC end dates, and make recommendations to maximise the retention of available supports during the transitional process.

Phase 2: Partners in change delivering on-the-ground impact feedback (July 2026 onwards)

The broader disability ecosystem is supported by many independent advisory councils, committees, reference groups, and oversight councils, which provide critical opportunities for on-the-ground expertise to be conveyed to service and program administrators to inform work plans and identify gaps. Advocates, as the people who support the most marginalised people with disability in their communities, are ideally placed to monitor the effectiveness of Foundational Supports, identify key service gaps, and advise on the growth and expansion of foundational supports over time.

We suggest an Oversight Council comprised of the following:

One advocate member per state and territory, with a particular recruitment focus on the most marginalised people with disability, and regional/rural/remote operating areas
Five specialist roles, identified after state and territory members to address specific representation gaps and key expertise required. These would be expected to include First Nations and CaLD advocacy, with potential for advocates who work with other groups of people with disability to be funded.

All members must be current independent disability advocates with organisations who currently deliver advocacy services. Organisations represented on the Oversight Council must be currently funded (partially or wholly) by either the National Disability Advocacy Program or a state/territory based advocacy funding stream in order to ensure they are contributing local, current place-based systemic experience.

Disability Advocacy Network Australia (DANA) holds the key connections required to coordinate this significant undertaking. DANA would take on the “hub” role in a hub-and-spoke operating model, leveraging existing connections to advocacy organisations working with marginalised people with disability nationwide. In a similar role to DANA’s successful Secretariat work and its administration of the National Centre for Disability Advocacy (NCDA), DANA would recruit the Oversight Council, provide Secretariat support for the council, including meetings, work plans and logistics, and be responsible for the delivery mechanisms for feedback to the Federal Government.

Recommendation 8: That the Federal Government invests $3 million in the Foundational Supports Mapping Project to inform the transition from ILC to foundational supports.

Part 3: Long-term funding of advocacy and its relationship to Foundational Supports

Beyond the initial mapping phase for foundational supports, the central role of independent disability advocacy and the need to significantly increase resourcing for advocacy organisations to meet demand has been repeatedly recognised. Importantly, the Disability Royal Commission (DRC) Final Report made many references to the way advocates defend human rights, promote safety and support inclusion in the daily lives of Australians with disability. As DANA has previously argued, bolstering the capacity of advocacy organisations will be essential to implementing the new ecosystem of supports for the NDIS and improvements to the interface to mainstream services and supports for people with disability envisioned by the NDIS Review. Demand for advocacy sharply increased with the introduction of the NDIS, and funding injections have not effectively addressed this increase in need.

Our consultation with the sector revealed strong convictions and perspectives among many of our member organisations that the distinct functions and unique strengths of independent disability advocacy are best preserved with separate funding and clear delineation from the new programs being developed as part of a foundational supports strategy. Advocacy program activities often include or are strengthened by information and capacity building work. Yet importantly independent advocacy also functions as a vital safeguard for the rights of people with disability and the various systems of support they interact with. Organisations told us:

*“throwing it together with a bunch of other things and losing the recognition of the skill that goes with advocacy and the importance of the individual advocacy work. And treating it as a capacity building information provision… can significantly diminish the value of the work. Whilst we do capacity building as a byproduct and we certainly do information as a byproduct - it’s not the core of the service. If you water it down by just calling it a general foundational bucket I think there’s a real risk of the importance of the work diminishing.”*²⁷

“Advocacy’s core purpose- defending the rights and interests of people with disability - could be diluted if it is grouped with broader foundational supports. Advocacy plays a distinct role in safeguarding rights and challenging systemic issues, which may not align with the general focus of foundational supports like capacity building or

²⁷ VIC advocate, Foundational supports and disability advocacy discussion forum with member organisations. November 2024.

navigation services. This could weaken its impact and effectiveness.”²⁸

Because of this, advocacy needs to take a parallel path to the rollout and operation of foundational supports. The act of advocacy, and the unconditional support it offers to an individual it supports, needs to retain its independence and have acknowledgement that it is different from other areas of service delivery that will form Foundational Supports. At the same time, we need to recognise how many organisations will be well placed to provide broader skills development, education, training and peer connection.

These initial recommendations lay out the needs of advocacy in the first instance, and we discuss how to balance individual advocacy and the capacity of our members to deliver other areas of foundational supports.

Increase capacity, continuity and security

Currently, independent disability advocacy including individual advocacy, is underfunded and has not been able to meet the levels of demand, which outstrips available resourcing. DANA has consistently advocated for funding increases to accommodate demand for independent disability advocacy support. Independent inquiries including the Disability Royal Commission have made numerous recommendations to increase funding for advocacy. Many disability advocacy organisations are struggling to survive following the cessation of some sources of funding. A joint Statement released by DANA and endorsed by over fifty organisations in July, reflects the reality that many advocacy organisations have needed to make drastic staffing cuts in this financial year to survive.²⁹

The National Disability Advocacy Framework (NDAF) is “a shared commitment between Commonwealth, state and territory governments to ensure there is access to advocacy services for all people with disability nationwide.” Although it commits governments to sharing responsibility for disability advocacy, the NDAF specifies that decisions about development, funding and management of advocacy programs are the responsibility of the relevant government.

In the context of shared responsibility between levels of government this lack of clarity about which level of government is responsible for shortfalls in the capacity of the sector has made it more difficult to hold funding bodies to account. Federal and state and territory governments must stay committed to joint funding responsibility. There needs to a strong commitment from both national and state and territory governments to fulfilling these responsibilities and to not engaging in disputes, stand-offs or battles over funding responsibilities or the scope of funded advocacy supports.

“We need more, not less, coordination between State and Federal governments on disability supports, as the NDIS Review points out. Agreements on funding for

²⁸ NSW Advocate, survey response on Foundational Supports and advocacy, November 2024. Similar themes emerged in contributions from organisations in other jurisdictions in the survey, discussion forum and other input.
²⁹ Joint Statement: Our disability advocacy organisations are in crisis and need a funding lifeline now | Disability Advocacy Network Australia (July 2024)

disability advocacy would be an important mechanism for structuring coordination of that kind, and the [Foundational Supports] system design provides an opportunity to develop them as part of it.”³⁰

Advocacy organisations need security and certainty of funding for organisational planning and sustainability. DANA frequently hears from CEOs and managers of disability advocacy organisations that short term grants of one or two years length, and last minute extensions, do not support capability building in the sector, and can result in challenges attracting and retaining qualified staff to funded programs.

*“For organisations to be assured of their ability to deliver services beyond the limitations of grant to grant period would make them better able to meet the service demands from clients & ensure the organisation’s ability to have professional development provision across all areas for advocates.”*³¹

People with disability, their families and supporters turn to independent disability advocacy organisations to make sure they can access mainstream and disability focused services and supports that all too often they are shut out from. Together, the different forms of advocacy address inequitable access, unfair decisions, and promote inclusion for people with disability. We urge governments to step up and address the shortfalls in disability advocacy sector capacity, as the transformational change envisaged by both the Disability Royal Commission and the NDIS Review will rely on a strong, sustainable future for independent disability advocacy.

A boost in funding is needed to resource face to face local support to be available to those whose needs cannot be met by phone or internet communication (including some people with intellectual or psychosocial disability or complex communication support needs). As discussed above, advocates are keenly aware that many of the most marginalised and disadvantaged people with disability require more time-intensive, face to face support, especially when there risks of violence, neglect or exploitation to be identified:

*“…enough resourcing including in rural and remote areas because …we work with people with intellectual disability in response to extreme marginalisation and complexity. We’re not really doing anything on the phone or in emails or any of that. It’s just ridiculous. We need to be able to go and sit with people and there are occasions. we’re going to regional areas and we’ll take two advocates because taking two sets of eyes to a situation…can be really helpful because we can’t be there all the time and so it provides the opportunity for one of the advocates to be sitting with the person directly and the other one to be…unpicking what’s going on with that service so that we get a much broader understanding of something”*³²

³⁰ VIC advocate, Comments on DANA Issues paper on Foundational Supports and disability advocacy. November 2024.
³¹ WA advocate, survey response on Foundational Supports and advocacy, November 2024.
³² 2022 consultation about advocacy – comment from SA organisation.

Recommendation 11: That disability advocacy needs to remain separately funded Foundational Support activities to preserve its strong ethos of being solely on the side of the person or people with disability.

Recommendation 12: That distribution of funding between jurisdictions takes into account higher levels of need:

in South Australia (due to lack of state government advocacy funding;
for organisations operating in rural, remote and very remote areas;
among First Nations communities to develop culturally safe and responsive advocacy, (in consultation with First Peoples Disability Network); and
among other organisations that work with multiply marginalised people with disability.

Preserve diversity, flexibility and responsiveness

Some state governments have restricted their advocacy programs to be directed only towards areas under state responsibility, limiting their work in relation to the NDIS or other Commonwealth government systems. This is an impractical limitation, as people with disability often approach organisations with multiple and often overlapping issues relating to a range of inaccessible systems and their interactions.

*“Don’t fragment support or create artificial boundaries [for advocates] when assisting an individual (e.g. can only work on state or fed issues) – [this funding approach] dramatically compromises the effectiveness of [advocacy] support, particularly when it’s actually assisting in gaps between systems.”*³³

It is extremely problematic to limit the scope of advocacy funding to being focused on the systems delivered at a particular level of government. People who need advocacy often present to advocacy organisations with a tangle of sometimes inseparable issues created by the barriers of overlapping systems at federal, state and territory and local government levels. Limiting funding to only advocating about systems delivered at a State or Territory level, for instance, would be unworkable, inefficient and go against principles underlying the “no wrong door” approach to service organisation that provides or links individuals with appropriate service interventions, regardless of where they enter a system.

“…the ability of [organisations to] work on only state or federal issues. That is nonsense. Because it’s all about systems failure, integration between systems is one of those places where it fails and that’s where you need to have advocates around to span that whole area and not be limited… also it takes away the benefit of the

³³ VIC advocate, Comments on DANA Issues paper on Foundational Supports and disability advocacy. December 2024.

continuity of understanding the client you’re working with and the challenges they face, regardless of what systems they’re dealing with.”³⁴

There are six models of advocacy currently funded within the National Disability Advocacy Program. These models frequently overlap practically and theoretically, and can also function to strengthen each other, and other related capacity building and safeguarding supports in a myriad of ways. Organisations value flexibility in deciding which model to use to best meet the needs of people with disability in their community and local area, and often refer between different components of their work to meet an individual’s needs. One Victorian advocacy manager explained:

*“…I would like to think as advocacy organisations that we’re in a position to support different models of advocacy, as opposed to splitting it up and that because it means that if somebody comes to your organisation and the work that you do around self-advocacy is separate and you’re not funded for that, for example, that makes it much more difficult to customise your work to the individual… where we have that unique opportunity to offer Citizen Advocacy as well. But it would be concerning, I think, if you didn’t have the opportunity to use the suite of advocacy models in your work, or at least find an opportunity. I mean, if we engage in legal advocacy we work in partnership with a legal advocacy organisation… I think it would make it a more problematic environment for people coming to advocacy organisations and being separated out.”*³⁵

Individual advocacy is not a replacement for building self advocacy skills but rather a support that needs to exist alongside. One type of support does not replicate the other; both individual advocacy and self advocacy programs can help a person with disability build the skills to self-advocate, however there are matters including NDIS appeals that require specialist knowledge of professional advocates and are rarely able to be effectively navigated by a person with disability on their own. Advocacy organisations are funded to deliver systemic advocacy, as well as other models of advocacy. There are clear advantages in having strong connections between advocacy directed at an individual level and systemic advocacy efforts directed at changing systems, culture and attitudes.

*Individual advocacy provides crucial on-the-ground insights into systemic issues, forming the basis for systemic advocacy efforts. Separate funding and administration could create silos, limiting the flow of critical information between these two areas and reducing the effectiveness of systemic advocacy in driving broader policy or system reforms.*³⁶

Many organisations have argued for flexible funding agreements that allow them freedom to respond to local, place-based circumstances (including determining the proportion of funding

³⁴ VIC advocate, Foundational supports and disability advocacy discussion forum with member organisations. November 2024.
³⁵ VIC advocate, Foundational supports and disability advocacy discussion forum with member organisations. November 2024.
³⁶ NSW advocate, survey response on Foundational Supports and advocacy, November 2024.

to be directed to providing the different models of advocacy), which would allow more latitude in determining which issues or activities they prioritise and models of advocacy they apply. The standard NDAP agreement stipulates only 10% of total funding for systemic advocacy, though some legacy arrangements have existed for organisations engaging in a higher proportion of systemic advocacy in their work.

Recommendation 13: That advocacy funding arrangements and reporting structures allow flexible advocacy delivery.

Preserve independence and strengthen management of potential conflicts

The need to advocate with independence, free of conflicts of interest, has been an important principle and value driving the work of the disability advocacy sector. Advocates need to be on the side of the person with disability only, so that the interests of governments, service providers or carers and family members do not take precedence or obscure the rights, preferences and wellbeing of the individual. The current funding situation has included advocacy organisations sometimes receiving ILC project grants (from the NDIA and then from DSS), for project work adjacent to their advocacy work in building information, relationships, referral networks and building peer support, leadership development, self-advocacy and representation capabilities.

Given the sector’s strong rights-driven focus on prioritising the voices of people with disability over other concerns, organisations are generally equipped to manage the inherent conflict in being reliant on funding from government departments, which in some cases may be the very agencies they need to interact with in their advocacy work to seek outcomes for people with disability. Organisations delivering the advocacy adjacent activities of educating the community about human rights and accessibility and supporting the development of peer support, decision making skills and disability leadership have generally been complementary to their funded advocacy work.

Some advocacy organisations are concerned that the inclusion of individual advocacy as a foundational support will reduce their ability for independence and autonomy. This flows from concerns with being tied to other services or supports delivered through the same Foundational Supports Strategy under which individual advocacy organisations would also receive their funding.

Funding agreements must not place any restrictions on advocating for people with disability in relation to other providers of foundational supports, meaning that advocacy organisations may be wary of implications for their ongoing funding.

“If advocacy funding is tied too closely to foundational supports, organisations might lose some autonomy in how funds are used. This could limit their ability to respond flexibly to emerging needs or systemic issues outside the foundational supports framework… Clear safeguards and dedicated advocacy funding streams would be

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essential to protect both security and independence.”37

Many of the capacity building activities that are envisaged to be funded through general foundational supports are functions that the advocacy sector has frequently performed, including supporting self-advocacy, rights awareness, supported decision making, peer support and leadership development. This work has sometimes been unfunded or underfunded through specific advocacy or information programs or philanthropy, or in recent years funded inconsistently through ILC projects or other time-limited grants from Federal or state/territory governments.

There may be conflicts that need to be managed if an organisation receiving funding through an advocacy program is concurrently also delivering capacity building supports through a separate grant under the Foundational Supports Strategy. Conflict may also arise if funding arrangements, either expressly or indirectly, constrain how organisations can direct their advocacy towards decision-makers or other government funded supports. Funded disability advocacy organisations are often well-equipped to effectively manage conflicts. The strong understanding across funded disability advocacy organisations of the need for an advocate to only be on the side of the person with disability, and represent their interests and rights, has been evidenced by the uncompromising integrity and willingness to ‘speak truth to power’ displayed across the sector, at both individual and systemic levels.

Independent advocacy organisations have always worked to avoid, minimise and manage conflicts of interest. NDAP organisations are independently certified under a Quality Assurance process through 3 year cycle of audits. The organisations are audited against relevant standards and a strong focus in the audits is demonstrating awareness of and management of potential conflicts: detailed policies; conflict of interest registers for staff, Board members, volunteers; processes for dealing with conflicts if they arise.38

Recommendation 14: That NCDA be funded to co-design guidelines and a toolkit to assist in managing conflicts of interest.

Part 4: Key components for a system of general Foundational Supports

Advocates have already offered their insights across the last 12 months of disability reform, including on the NDIS Bill, Disability Royal Commission response, Section 10 ‘NDIS Support Lists’ and are ready to support Foundational Supports. In February we released the Priorities Report, which consulted with advocates and the community to identify key areas that Foundational Supports needs to address to ensure the system will be available for everyone. In this last section we propose key principles and policies from advocates that build from existing systems so they can get started right away.

37 NSW advocate, survey response on Foundational Supports and advocacy, November 2024. 38 Disability Advocacy Network Australia (2016) Response to Department of Social Services Discussion Paper: Review of the National Disability Advocacy Program June 2016 (Endorsed by Australian Federation of Disability Organisations), p14-15

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Guarantee supports are available at no cost

The design and rollout of foundational supports also needs to keep the needs of those most marginalised in the community at front of mind. These people regularly seek and are supported by advocates to navigate some extremely complex issues, and will require specific attention to ensure they receive the support needed.

There is little use in shifting supports towards foundational supports if they are not practically as accessible as those in the Scheme. One of the most important features of the NDIS is that it is not means tested. Provided you can navigate the often quite difficult access process there is no consideration of you or your family’s capacity to fund these supports yourself. That all supports are free at the point of service has been a key part of the program’s design and a tremendous strength of the scheme even as it has encountered issues.

We know that people with disability experience higher levels of poverty and economic marginalisation than the general population. The most recent Australian Institute of Health and Wellbeing data said that about 770,000 of people with disability were on the Disability Support Pension (DSP) and 808,000 were on the Jobseeker Payment.39 A recent ACOSS/UNSW study found that 36% of people relying on the DSP were living below the poverty line and were 5 times more likely to lack the funds to afford medical treatment the general population. 40 These already horrifying statistics were worse for those on the Jobseeker payment: 44% live below the poverty line and are 14 times more likely to miss at least one substantial meal a day.41

If supports are only available via systems that cost money people will not be able to access them. The broad efforts of the NDIS Review to re-distribute the location of supports across society and make mainstream services more accessible will fall at this very early hurdle if this is not established and protected early in the design of foundational supports. The NDIS will continue to be the only source for people to find and receive supports in a way that’s materially accessible and secure over the long-term.

Additionally, the NDIS is an administratively burdensome scheme for the many who are asked to navigate it. Imposing similar disability or paperwork requirements for people to access Foundational Supports will also substantially reduce accessibility and uptake of these crucial services. Programs that ask people to go to great lengths to prove that they have a disability, complete long and complex intake agreements, or otherwise look to impose strict rules about who can and can’t access them have two main effects. 1) Fewer people that need those supports will use them and 2) the people running those supports have to spend time and money running admin instead of supporting people.

39 Australian Institute of Health and Wellbeing, ‘People with Disability In Australia — Income Support’ https://www.aihw.gov.au/reports/disability/people-with-disability-in-australia/contents/income-and-finance/income-support

40 Australian Council of Social Services and University of New South Wales, Material Deprivation in Australia; The Essentials of Life, https://povertyaninequality.acoss.org.au/wp-content/uploads/2024/11/Material-deprivation-in-Australia_the-essentials-of-life.pdf, 41 ibid

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Ongoing issues about service availability and rural and remote areas that do exist with NDIS services are also relevant to this discussion.42 There is an opportunity in block funding foundational supports to side-step some of the issues that have emerged in attempting to create markets in these areas. However, issues around attracting committed and skilled staff to perform these roles will remain. As discussed above and in joint positions from disability representative organisations, embedding a focus on expanding place-based and expert-led specialised programs that leverage existing networks and incorporate inclusive employment pathways for people with disability and lived experience will be necessary to make sure people are not left behind.43

Shifting to a more universal system of Foundational Supports offers significant benefits and could begin to solve the crises that have emerged around market failure in several areas, but ensuring they are economically accessible and easy to use is crucial to making that happen.

Recommendation 15: Foundational Supports are available at no cost, with minimal eligibility requirements and without means testing.

Start with the gap in assistive technology access

Another area discussed in DANA’s priorities project earlier in the year was the urgent need for an assistive technology fund that sat outside of the NDIS.44 The report found that there was a very large gulf in the availability of aids and equipment for people who would benefit from some assistance but who aren’t eligible for the Scheme because of the high perme Options to both assess and fund assistive technology are reasonably well-developed in the NDIS, but almost entirely absent outside of it. 45

To address this, we proposed that the Federal Government create a disability aids and equipment scheme that would support those who aren’t on the NDIS. Caps of $5000 for low-cost items and $15,000 for higher intensity items would provide people the support they need to continue

This is another area where we have structures to build from. There is a similar scheme that operates in the Aged Care Sector and the Government is in a position to apply findings and insights from the providers of the $1 billion dollars spent each year in the NDIS on assistive technology, many of whom would be in a position to take on this additional work. The specific model proposed in the priorities project is based off JobAccess which provides funds for services and modifications in relation to employment upwards of $10,000.

42 Disability Advocacy Network Australia, Submission on NDIS Participant Experience in rural, regional and remote Australia, <https://www.dana.org.au/wp-content/uploads/2024/03/Rural-regional-and-remote-experiences-DANA-Submission-Final-240301.pdf>

Cherry Baylosis and Demi Woods (2022) The Aussie Battlers: Life with a disability in regional, rural and remote NSW, Disability Advocacy NSW Scoping Research Report: Disability Advocacy NSW website (da.org.au), Accessed 4 November 2022.

43 See Foundational Supports — a joint submission from Disability Representative Organisations — December 2024

44 Disability Advocacy Network Australia, Priorities Project, 9-14.

45 Disability Advocacy Network Australia, Priorities Project, 9.

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A similar model, assuming that the amount of people requiring such technology who are not eligible for the scheme, would likely cost something similar. A starting fund of approximately $15 million would allow for the immediate delivery of some crucial supports and to identify the ongoing needs of the community as other foundational supports and NDIS changes complete.

Establish pathways between systems and fund assessments

Having a clear pathway to people to shift between receiving Foundational Supports and supports on the NDIS will be essential to make sure people don’t fall between the gaps between systems. Some of this will need to be specific to particular groups. For example, children and young people transitioning from early intervention supports to longer-term supports through the NDIS, or people exiting hospital after sustaining an injury should have specific ways to determine where best they can be supported.

However, there also need to be supports to help manage the gap between foundational supports and supports through the NDIS if we want to ensure that people are not stuck in systems that aren’t working for them. This affects many different types of people with disability, but has particular impacts on people with psychosocial conditions, chronic illness, and those moving out of closed settings such as boarding homes.46

One of the regular areas of difficulty experienced by people supported by advocates is getting the necessary reports together to apply for NDIS, DSP or other government services.47 Public options are few and far between and often attract large gap fees and private specialists are vastly too expensive for many to get access to the NDIS.48 Significant time is often spent applying for charitable grants or the like to bridge the gap.49 Many applications aren’t as strong as they could be because they have to rely on information that is a few years out of date, or have to submit reports that do not directly address the specific technical hurdles the NDIS sets up for eligibility.

We know that the NDIA regularly provides funding for diagnostic or functional assessment if you take an access application to the AAT. However, there are so many administrative and justice hurdles in the way it means only a small percentage are able to access this crucial support.

46 Department of Social Services and Deloitte, Evaluation of the Decision Support Pilot, vi. 47 Department of Social Services and Deloitte, Evaluation of the Decision Support Pilot, pg 13, 29, 36; Disability Advocacy Network Australia, Priorities Project, 4; 48 Decision Support Pilot Report, 4. 49 Ibid, 37.

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Those professionals are chosen by the Agency and are often asked to go through a person’s entire, often complex, medical history in just a couple of hours. This regularly produces poor evidence,50 is ultimately at the discretion of the NDIA, and is at the end of an intense and stressful tribunal process. Millions is spent by the NDIA each year to commit the initial assessment, to do an internal review, and then employ lawyers at the Tribunal to even get someone to the stage where they might be prepared to fund an assessment. 51

This is something raised by advocates very regularly, and is seen across almost all areas of service delivery. This is an area foundational supports need to address.

DANA believes this could be solved with a specific foundational support program that targets those who may be eligible for the NDIS but require evidence and medical support to make it happen. A national assessment scheme should be created that would give people $5,000 to get a report from their relevant medical specialist and functional capacity assessment from an OT.

This could be achieved through inclusion of additional line item for Medicare rebate (noting the need for these services to be practically bulk billed)52 and activated by a GP referral. This would have the benefit of relying on existing infrastructure and resources to better respond to the support requirements of people with disability. This can and should be trialled, but specific attention should be directed to rural and remote areas to detail the available services in that area.

While it would be reasonable to place limits on how regularly someone may be able to access this fund, there should be straightforward pathways for people to access the fund again in a change of circumstances or an increase in the impact of a disability. Standard consultation rates for both specialist appointments and functional assessments should apply to ensure that the program respects the need for services to be available at no cost.

Exact modelling for this problem is hard to pin down, but supporting 3,500 people would represent 5% of the last 12 month’s access applications to the NDIS would appear well targeted to support those experiencing additional marginalisation discussed above. If all those eligible fully utilised the cap, which is unlikely, this would cost $17.5 million to operate.

Expected savings from improved initial decision making and the reduced cost of commissioning assessments through legal avenues would likely mean this budget cost would be less in practise.

50 Ray and NDIA [2020] AATA 3452, [148]. 51 Luke Henriques-Gomes, ‘NDIS Agency to Spend $50m on lawyers to fight people with disability who appealed funding cuts’ The Guardian https://www.theguardian.com/australia-news/2022/jun/01/ndis-agency-to-spend-50m-on-lawyers-to-fight-people-with-disability-who-appealed-funding-cuts 52 Grace Burmans, Angela Ho, ‘Bulk-billing rates decline across Australia as cost-of-living pressures mount’ ABC News, https://www.abc.net.au/news/2024-01-08/fewer-gps-offering-bulk-billing-amid-cost-of-living-crisis/103291710

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Recommendation 17: That a $17.5 million referral program for disability diagnosis and assessment be established

Establish Community Inclusion Hubs

As we discuss above, design and principle of commissioning framework needs to be led by disability community. Foundational supports should build on filling gaps in existing diverse landscape, rather than providing a universal ‘one-size-fits all’ model to address issues.

As one advocate said:

“funding programs to support large, nationwide initiatives like Foundational Supports often favour bids for funding from larger organisations that purport to offer value-for-money through scale. These organisations will often say (in their funding bids) that they cover rural and regional areas, or say that they will extend their urban services to do so, but in reality do not. When the time comes for implementation, the promised ‘full coverage’ reverts to occasional outreach visits, maybe a series of roadshow workshops or even just an app, website or central telephone service. To people with disability living in rural and regional settings who are looking for regular, reliable, locally-relevant supports, these central and occasional services are not supports at all.

The foundational supports built into any Foundational Supports system must be real and relevant. This requires people on the ground, there for the long-haul, responsive to local needs and conditions and therefore funding (adequate levels, adequate conditions or requirements and adequate targeting) to achieve this.”

A good example of what this might look like is the community inclusion hubs already in place in some areas and detailed by our priorities report earlier in the year.53 These areas are administered by relatively small organisation based in their communities to be a place where people can turn up and get support right away. This includes peer connection, meeting spaces for local areas, areas for services to be delivered, and a place to directly interface with the many supports that need to be delivered through Foundational Supports.

These hubs, such as the Patterson Street Hub in Tennant Creek run by the First Nations Disability Network, can be a critical area to receive support for First Nations people and could serve as a model for other communities that are likely to be excluded from these processes. Ensuring that responses are local and community led is a crucial step to ensuring that these communities have a say in their communities and the supports that are going to be right for them.

A pilot program where 15 hubs should be established around the country (2 per state and for NT; 1 for ACT) with a split between serving rural and remote areas as well as marginalised

53 DANA, Priorities Report, Page 16 <https://www.dana.org.au/wp-content/uploads/2024/05/Priorities-Project-Report_WEB-1.pdf>

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and underserved communities in metropolitan centres. Each hub would be given $2m to secure and fit-out a commercial property to be accessible for these purposes.

Recommendation 18: That the introduction of a $22.5 million Community Inclusion Hubs program be piloted as a Foundational Support.

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