The many roles for independent advocacy in supporting and driving transformative change

As we explored in a previous post last year, the NDIS Review acknowledged in its recommendations and actions that advocacy plays a critical role in promoting, protecting and defending the human rights of people with disability and improving the overall operation of the scheme. Today we’re digging deeper into this theme and how it was reflected throughout the multi-volume final report of the Disability Royal Commission (DRC).

The DRC recommendations traverse many areas of the lives of people with disability, including proposals for the long-term phase-out of group homes, Australian Disability Enterprises (ADEs) (sheltered workshops), and segregated education.  Many sections of the report contemplate a role for disability advocates and advocacy organisations, whether through fulfilling existing or expanded functions across the NDIS, safeguarding, complaints and many domains of life, like accommodation and education. These are historic recommendations with expected huge impacts for people with disability and for independent disability advocates in managing change.

What we know

We know that currently independent disability advocates are doing a lot of risk management and crisis intervention work to prevent or respond to the violence, abuse, neglect or exploitation experienced by people with disability. This includes identifying risks, making reports, connecting with organisations, supporting complaints, legal or justice processes, and navigating support systems, including the NDIS. As we argue in our Pre-Budget submission (and heard throughout the DRC hearings), independent disability advocacy plays critical roles in both facilitating and safeguarding the disability and NDIS ecosystems, including through:   

  • helping to prevent NDIS exploitation by supporting people with disability to advocate for their rights and to address unfair treatment or plan utilisation by providers;  
  • building capacity, understanding and confidence so people with disability can better use their NDIS funding and meet their goals;  
  • keeping mainstream systems accountable by ensuring they provide equitable access to people with disability (meaning mainstream supports do not need to be unnecessarily duplicated); 
  • supporting the Australia’s Disability Strategy (ADS) outcome of Safety, Rights and Justice and ensuring Australia meets its obligations under the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD); and  
  • working with people with disability to build their own capacity to self-advocate, building trusted relationships over time. 

As we explored not long after the report was published in our analysis of three specific advocacy recommendations, the DRC has recommended additional funding for advocacy, though not at amounts that would meet the existing levels of demand, let alone the unmet need. DANA expects advocacy demand to increase significantly in the coming months in response to proposed sector changes arising from both the DRC and the NDIS Review. That is why DANA and our member organisations are calling for significantly higher injections of funding in the next budget in our current campaign: SPEAK UP for Independent Advocacy 

What about other recommendations?

Beyond those three recommendations on funding, data and cultural safety in the Advocacy and informal supports chapter of Volume 6, there are other recommendations made in relation to:  

  • the proposed Disability Rights Act (which we focused on in previous analysis) is recommended to include a legislated right to equal recognition before the law, specifically recognising “the right of people with disability to access and use advocacy services in making and participating in decisions, communicating their will and preferences, and developing their decision-making ability.” (Recommendation 4.6)   
  • systemic advocacy to promote supported decision making (Recommendation 6.14)  
  • increasing awareness and referrals to advocacy throughout NDIS processes and collaboration between disability services and disability advocacy organisations, especially in relation to people living in supported accommodation contexts. (Recommendation 10.5) 

(We will delve into these recommendations in upcoming analysis of advocacy in the context of the NDIS and of supported decision making.)     

In addition, there are a number of recommendations that mention a role for disability advocates or are premised on the availability of independent advocacy from a sector resourced to meet demand and need across diverse contexts:   

  • assisting people with disability who are being represented by public advocates, public guardians and public trustees (recommendation 6.5)   
  • realising supported decision making principles, (Recommendation 6.6)   
  • assisting people with disability living in supported residential services, boarding houses and their equivalents, both in generally strengthening oversight and complaints and specifically focused work on helping residents to identify alternative, longer term accommodation options. (Recommendation 7.38)   
  • helping people with disability to navigate homelessness supports (Recommendation 7.40)  
  • assisting and facilitating individuals to explore and understand emerging options, make decisions and transition to alternative housing arrangements, (Recommendation 7.42) including supporting the proposed phase out of group homes, recommended by half the Commissioners (Recommendation 7.43) (You can also read our analysis of other DRC recommendations addressing housing and homelessness). 
  • supporting the participation of students with disability, and their families and carers to take part in their school community and decisions that affect their educational experience. (Recommendation 7.6)       
  • supporting families in making complaints in educational settings (Recommendation 7.10)   
  • assisting people to make and pursue outcomes through accessible complaint processes: about NDIS supports (Recommendation 10.20) and more broadly (Recommendation 11.3)  
  • providing relevant information to be considered in the context of “disability death review schemes” (Recommendation 11.14)  

As we explored at the conclusion of our previous analysis of accessible complaints recommendations in Volume 11, the DRC envisages disability representative and advocacy organisations being involved in supporting genuine co-design with people with disability in a diverse range of areas; for instance, in establishing or developing:  

  • a Disability Rights Act (Recommendation 4.1);  
  • a National Disability Commission as independent statutory body (Recommendation 5.5) and its new complaint mechanism (Recommendation 4.19) under that Act;  
  • a national plan to promote accessible information and communications (Recommendation 6.1); 
  • data collection and public reporting on psychotropic medication (Recommendation 6.37);  
  • research on restrictive practices (Recommendation 6.38); (See our analysis) 
  • education and training resources for staff of Disability Employment Services (Recommendation 7.17);  
  • support to transition to inclusive employment for people working in ADEs (Recommendations 7.28 and 7.30); and 
  • practical guidance on supported decision making (Recommendation 10.7).  

Funding advocacy is the next crucial step

To support meaningful co-design and consultation the advocacy sector needs to be resourced or this engagement will run the risk of being tokenistic and inauthentic, and of perpetuating exclusion without properly incorporating or reflecting the needs and perspectives of people with disability.   

In addition to supporting representation, peer support and leadership development activities, advocacy organisations regularly take on the (often unfunded) work of creating, and disseminating accessible information resources about updates, and legislative and policy changes. During the implementation process for the raft of reforms to arise from the DRC recommendations and NDIS Review, there will certainly be additional demand on advocacy organisation to interpret and assist people with disability to understand changes and information and manage transitions across a diverse population (as there was with the introduction of the NDIS). Many of the people with disability that our member organisations work with are likely to need individualised support to comprehend and navigate transitions, including through face-to-face time with a trusted advocate.  

Given their extensive expertise across these areas and grassroots relationships with their local communities, disability advocacy organisations will be instrumental in supporting other areas marked for reform:  

  • strengthening and embedding awareness and understanding of disability rights generally (Recommendation 4.21) and in disability services (Recommendation 10.1), places of detention (Recommendation 8.2), and health services (Recommendation 6.31);  
  • enabling remedies through the courts under the Disability Rights Act (Recommendation 4.20);  
  • contributing to oversight, safeguarding and human rights adherence across a range of services systems;  
  • providing independent information on available supports and options, including under consumer law, (see this submission to the NDIS Review by Gerard Brody); and  
  • enhancing the meaningful involvement and inclusion of people with disability in leadership, decision making and governance 

The need for advocacy is critical, but currently only half the people with disability who seek support from advocates can receive it. Furthermore, additional work will be required to support people with disability through changes to implement the DRC recommendations. This work will require proactive outreach to identify people with disability in need of support, in addition to meeting the current levels of demand for individual advocacy services.    

To address the immediate funding shortfall, DANA proposes an immediate funding injection of $43 million to allow disability advocacy organisations currently funded by the NDAP to meet existing demand until June 2025. This is an approximate doubling of existing funds adjusted for an 18-month investment period. During the next 18 months, efforts should be made to remediate existing data and understand sector needs to allow for adequate funding allocations after June 2025. (Read more detail in our Pre-Budget submission 

This will ensure the voices of people with disability are amplified to guide reforms, and equip disability advocacy organisations to effectively support, and drive the long overdue transformation needed to address exclusion and discrimination, prevent violence, abuse, neglect and exploitation and realise human rights and inclusion in Australia.   

So now is the time to get involved in our campaign to influence key decision makers to take action in the next Federal budget and SPEAK UP for Independent Advocacy!