Individual Disability Advocacy
Program Consultation
Submission to the Department of Health, Disability and Ageing
policy@inclusionaustralia.org.au admin@inclusionaustralia.org.au www.inclusionaustralia.org.au inclusionaustralia.au Page 1
About Inclusion Australia
Inclusion Australia (IA) is the national peak organisation representing the rights and interests of Australians with an intellectual disability and their families. Founded more than 70 years ago in 1954, our mission is to work with people with an intellectual disability, their families and our members to make positive change.
Our strength is in our national representation and our connection to our community. We have a member organisation in every state and territory across Australia:
- ACT Down Syndrome and Intellectual Disability (ACT DSID)
- Council for Intellectual Disability (NSW)
- Developmental Disability WA (DDWA)
- Inclusion Northern Territory (Inclusion NT)
- Parent to Parent (P2P, Queensland)
- South Australian Council on Intellectual Disability (SACID)
- Speak Out Advocacy (Tasmania)
- Victorian Advocacy League for Individuals with Disability (VALID).
Our systemic advocacy draws on the deep, collective experience of our members, who have spent decades advancing the rights of people with intellectual disability and their families in their jurisdictions. Their expertise in peer support, individual and systemic advocacy, and community engagement—combined with their trusted, long-standing relationships with their communities—ensures that the voices of people with intellectual disability are heard and acted on.
Introduction
Background
Inclusion Australia welcomes the opportunity to provide input into the development of the new Commonwealth Individual Disability Advocacy Program (IDAP). This reform is of considerable importance to people with an intellectual disability and their families, and to the specialist advocacy organisations that support them. We look forward to continuing to work with the Department of Health, Disability and Ageing (DHDA) on this important reform.
Across our national network, member organisations bring a diverse range of experience in delivering individual and systemic advocacy over many years. One member, Speak Out Advocacy, is currently funded under the National Disability Advocacy Program (NDAP), while others are long-standing advocacy organisations operating primarily through state and territory funding arrangements and have not previously had access to Commonwealth individual advocacy funding. Inclusion Australia and its members also work closely with other NDAP-funded organisations specialising in advocacy for people with an intellectual disability.
This places Inclusion Australia in a unique position to understand both the opportunities and the risks associated with the proposed transition from NDAP to IDAP. We appreciate the Department’s work to date in releasing a public Policy Framework and consultation paper, and we offer the recommendations in this submission to support the development of a program that is equitable, effective, and fit for purpose for people with an intellectual disability and their families.
We note that DHDA has undertaken several strands of consultation to date, including targeted discussions with some Disability Representative Organisations (DROs) and sector-wide consultations delivered by Disability Advocacy Network Australia (DANA).
Transition from NDAP to IDAP and implications for the sector
The proposed move to an open, competitive tender process under IDAP represents a profound shift from past arrangements. While greater openness may help address historical inequities in access to Commonwealth advocacy funding, it also creates risks of instability and loss of local, specialist expertise.
For Inclusion Australia’s members, this reform creates very different starting points:
- Some organisations may apply for Commonwealth individual advocacy funding for the first time.
- Others, including existing NDAP-funded organisations, face uncertainty about continuity of funding.
- Some organisations may need to decide whether participation in IDAP is viable or desirable, depending on eligibility rules, administrative requirements, scale expectations and funding adequacy.
In addition, we note the extension of the current NDAP model until January 2027, including a three-month overlap with the commencement of IDAP in November 2026. While this extension is welcome, we note that a 3-month overlap between programs is unlikely to meaningfully mitigate the transition risks for organisations that do not secure ongoing funding under IDAP.
In practice, the primary value of a short overlap period is to enable warm handovers for people currently receiving advocacy support to organisations in the new program. However, delivering effective and ethical handovers is a complex and resource-intensive task, particularly for organisations facing the loss of funding. During this period, organisations must simultaneously manage workforce uncertainty, retain skilled advocates for as long as possible, support clients through transition, and wind down operational commitments such as leases, vehicles, administrative systems and governance obligations. In these circumstances, client transition work is at risk of becoming secondary to organisational closure requirements and the possibility of losing staff.
As a result, a three-month overlap is unlikely to reduce disruption for people receiving advocacy support or
to support genuine continuity of relationships, particularly for people with an intellectual disability for whom trust, familiarity and relational stability are critical. Without additional transitional safeguards, there remains a significant risk that people will experience gaps in advocacy support at precisely the point of greatest uncertainty.
We welcome several aspects of DHDA’s proposed Policy Framework for the new IDAP. We support the commitment to an outcomes-focused approach that seeks to improve real results for people with disability, including preventing harm and addressing systemic barriers. We also endorse the emphasis on transparent and trusted relationships between government and funded organisations, and the principle of continuous improvement through evidence and learning.
In addition, the move to longer and more stable funding periods through multi-year grants, including up to six years for networked providers, is an important step toward organisational stability and workforce sustainability. These factors are critical to building organisational capability, retaining specialist advocates, and maintaining trusted relationships with people who rely on advocacy supports. The proposed three funding streams – service delivery, a national advocacy helpline, and sector strengthening – have the potential to create a more integrated model that, in principle, could support a more connected and coordinated advocacy ecosystem. We also acknowledge the intent to strengthen outreach to people most in need, including people in rural, remote and segregated settings, and to promote cultural safety across services.
People with an intellectual disability as a priority cohort
The Policy Framework seems to intend to direct advocacy effort toward people at greatest risk of harm. Inclusion Australia strongly supports this objective. Evidence from the Disability Royal Commission makes clear that people with an intellectual disability experience disproportionately high rates of violence, abuse, neglect and exploitation, often in setting-specific ways, including within segregated education, housing and employment environments. We have included a snapshot of findings from the Disability Royal Commission in Appendix A, which demonstrates the disproportionate impact of harms on people with an intellectual disability and their families, and the subsequent likelihood of increased need for ongoing independent advocacy. These harms are compounded by barriers to accessing independent information, limited informal safeguards, and reliance on others to raise concerns or seek help. For this reason, people with an intellectual disability must be understood as a priority cohort within IDAP.
This need is further heightened by the scale and pace of reform currently underway across the disability policy landscape. Major changes flowing from the NDIS Review and the Disability Royal Commission are reshaping core systems that people with an intellectual disability rely on, including reforms relating to inclusive employment, the operation of the Disability Discrimination Act, the National Disability Insurance Scheme (NDIS) and the NDIS Quality and Safeguards Commission.
Periods of significant structural reform can bring increased risk, confusion and exclusion, particularly for people who already face barriers to information, advocacy and decision-making. As systems change, people with an intellectual disability and their families are more likely to require independent advocacy to understand their rights, challenge decisions, prevent harm, and ensure that reforms translate into improved outcomes in their lives. IDAP will therefore be operating at a time when the need for accessible, specialist and sustained advocacy for people with an intellectual disability is likely to increase.
Some advocacy organisations have a long-standing history and culture of supporting, facilitating and enabling Self Advocacy Groups for people with intellectual disability in their local area. Provision of self advocacy training as a mechanism for increasing the capacity of people with an intellectual disability to speak up about their rights is an important role played by the advocacy sector and a powerful contribution to strengthening the voice and visibility of people with an intellectual disability.
The role of families in effective advocacy
Family members play a critical role in supporting effective advocacy for many people with an intellectual disability, including for people for whom self-advocacy is not accessible or not consistently possible. While the individual person with disability is, appropriately, the formal “client” of an advocacy service, in practice advocates who work with
people with an intellectual disability are often also working closely (or at times most intensively) with family members alongside the individual. Families frequently provide essential context, continuity, and practical support that enables advocacy to be effective.
This has important implications for the design of the new IDAP program. Program settings that are overly narrow in their conception of advocacy as a direct, individualised interaction risk undermining outcomes for people with an intellectual disability, for whom family support is often critical. Effective advocacy must allow for meaningful inclusion of families where this is in the interests of the person, consistent with supported decision-making principles and other forms of inclusive practice. This includes recognising the additional time, skill and relational work required to navigate family dynamics, safeguard the person’s rights and preferences, and ensure that advocacy remains independent while including and, where appropriate, being guided by family support.
It is also important to recognise that many specialist intellectual disability advocacy organisations have their origins in family-led movements responding to systemic exclusion, abuse and unmet need. This history reflects both the longstanding absence of appropriate safeguards for people with an intellectual disability and the central role families have played in driving rights-based change. IDAP should build on this legacy by ensuring that the Policy Framework supports advocacy approaches that are inclusive of families and responsive to the realities of people’s lives.
In this context, we also emphasise the importance of advocacy services supporting capacity building not only for people with an intellectual disability, but for family members and other trusted supporters, including through peer support. Capacity building in this sense has a critical safeguarding function. When individuals and families are better equipped to understand rights, recognise early warning signs of potential or actual harm, navigate systems, and seek support, they are more likely to intervene before issues escalate into violence, abuse, neglect or exploitation.
For advocacy organisations, this work requires time, trust, continuity, and skilled advocates who can work alongside families and individuals to build confidence and capability while maintaining the independence and rights-based focus of advocacy. For IDAP to contribute to harm prevention and improved outcomes, the program must recognise and support this form of capacity building as a legitimate and valuable component of individual advocacy. This could be reflected in program guidance, funding models, and tender assessment processes, including by recognising organisations that demonstrate strong practice in building the advocacy capacity of individuals and families as part of an effective safeguarding approach.
Parents with an intellectual disability
Parents with an intellectual disability should also be understood as a priority cohort for specialist advocacy whose needs should be considered within IDAP. Parents with an intellectual disability are frequently required to navigate complex, high-risk systems – including child protection systems in which this cohort is alarmingly over-represented^1 – and in which there are significant power imbalances. Without access to independent advocacy with specialist expertise in working with this cohort, many parents with an intellectual disability have profoundly limited opportunity to assert their own rights or to safeguard the rights and wellbeing of their children. In this context, advocacy plays a crucial role in supporting decision-making, challenging discriminatory assumptions, and mitigating the risks of system-driven harm.
The well-documented experiences^2 of parents with an intellectual disability reinforces the need for the design of IDAP to prioritise the needs of those who are exposed to heightened risk as a result of systemic barriers and failures. This also demonstrates that effective advocacy for this cohort – as with people with an intellectual disability more broadly – must include sustained engagement and trusting relationships to
^1 Libesman, Terri., et al. (2023). Parents with Disability and their Experiences of Child Protection Systems, Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Retrieved from: https://disability.royalcommission.gov.au/system/files/2023-07/Research%20Report%20%20Parents%20with%20disability%20and%20their%20experiences%20of%20child%20protection%20systems.pdf ^2 Collings, Susan., et al. (2017). Home and the social worlds beyond: Exploring influences in the lives of children of mothers with intellectual disability. Child:Care,Health&Development, 43(5), 697-708. doi:10.1111/cch.12456;
support parents to understand their rights, participate meaningfully in decision-making, and develop the skills and confidence to engage with complex systems that have historically excluded or harmed them. It also requires advocates with specialist capability, time and organisational backing to work at the pace of the person, respond to high levels of stress and scrutiny, and navigate systems where the consequences of limited or short-term advocacy can be profound and long-lasting for both parents and children.
These realities have direct implications for IDAP design and funding. To achieve its objectives of preventing harm and improving outcomes for people most at risk, IDAP must adequately resource the intensive, relational and specialist nature of advocacy required by parents with an intellectual disability – as well as people with an intellectual disability more generally – to ensure the program does not risk falling short for a cohort for whom independent advocacy is particularly critical, and who are among those most profoundly impacted by the consequences of system failure.
Our recommendations
We believe that to ensure IDAP is fit for purpose for people with an intellectual disability and their families, the following actions are needed. The recommendations set out below are informed by what we heard through consultations conducted by two of our member organisations, as well as Inclusion Australia’s and our members’ long-standing experience in delivering specialist individual and systemic advocacy for people with intellectual disability. Consultation data is discussed in greater detail from page 7 of this submission.
- Explicitly account for the resource-intensive and relational nature of inclusive practice, including engagement with families
IDAP funding arrangements should explicitly recognise that effective advocacy for people with an intellectual disability is inherently more resource-intensive and requires intentional, inclusive and relational practice. Building the capacity of people with an intellectual disability to understand their rights, articulate concerns, and participate meaningfully in individual or systemic advocacy requires time, careful planning, skilled advocates and sustained investment. Advocacy organisations must be resourced to work at the pace of the person, use accessible communication, provide supported decision-making, and build trusting relationships over time.
For many people with an intellectual disability, particularly people with higher or complex support needs, family members play a critical role in enabling access to advocacy, supporting communication, and sustaining engagement throughout an advocacy process. IDAP must explicitly support advocacy models that include meaningful engagement with families and other trusted supporters, where this is in the interests of the person and consistent with supported decision-making and rights-based practice.
This relational and resource-intensive work is particularly necessary because people with intellectual disability experience disproportionately high rates of lifelong marginalisation, and in many cases, trauma, violence, abuse, neglect, or exploitation. These experiences mean advocates often need to invest additional time and effort to build trust, ensure safety, work collaboratively with family members or other key supporters, and provide consistent, tailored support so that the person can meaningfully engage and have their rights protected.
- Recognise supported access as central to advocacy outcomes
The outcomes framework must explicitly recognise that access to advocacy is not only about service availability, but also about awareness, supported access pathways, communication assistance and logistical support. These factors consistently emerged as essential enablers of access in our consultations. People with an intellectual disability need supported pathways that help them find and engage with advocacy as a preventative safeguard, before issues escalate to harm or system failure.
This is particularly important in the context of significant system reform across the disability landscape, including changes arising from the NDIS Review, the Disability Royal Commission. As systems change, people with an intellectual disability and their families will require increased support to understand new policies, assert their rights, and navigate complex transitions. IDAP must be designed to meet this
heightened demand for supported access.
- Support IDAP to promote proactive community engagement with advocacy and develop resources and information to build community awareness and access
IDAP organisations must be resourced to undertake proactive, sustained community engagement and promotion, including participation in disability expos, local forums, face-to-face outreach, and relationship-building with people with disability, families, support workers, intermediaries and local services. These activities are essential to ensuring people with an intellectual disability are aware of advocacy, understand how it can support them, and are able to connect with the right service at the right time, including before issues escalate to crisis or harm. As our consultations, discussed from page 10 show, many people with an intellectual disability and their families are not aware of the availability of funded advocacy. Targeted, proactive work is needed to build community awareness and support access to IDAP.
Given the high turnover in the disability workforce, this outreach must be ongoing and recurrent, rather than treated as a one-off establishment or transition activity and must recognise the time and resources required to build and maintain strong local networks and referral pathways.
In addition, responsibility for promoting awareness of individual advocacy must not rest solely with advocacy organisations. DHDA should commit dedicated resources, within its own program and communications budgets, to develop and implement a targeted communication and engagement strategy for IDAP. This strategy should support:
- Clear, accessible information about the purpose and benefits of independent advocacy
- Practical pathways to connect people with intellectual disability, families and supporters to their local IDAP-funded advocacy organisation
- Targeted materials for the broader disability ecosystem, including support workers, service providers, health professionals and community organisations. This is consistent with the intention of General Foundational Supports and would complement this work as it progresses, especially in relation to peer support: a crucial support that some advocacy organisations provide for people with an intellectual disability and families.
This work cannot be met through existing platforms such as the Disability Gateway, which are not designed to actively promote independent advocacy or facilitate locally grounded connections. A purpose-built, funded communication approach is required to complement the outreach undertaken by advocacy organisations and to support early, preventative access to advocacy. This needs to be co-designed with people with disability and with advocates.
Proactive engagement with local services also supports disability service providers to meet their own safeguarding obligations, including emerging expectations under strengthened Supported Independent Living (SIL) practice standards and the work of the NDIS Quality and Safeguards Commission. When providers have a clear understanding of the role of independent advocacy and established local referral pathways, they are better equipped to encourage early, preventative engagement with advocacy as part of a strong safeguarding culture, rather than only responding once harm has occurred.
- Resource specialist capability through the sector strengthening stream
While the inclusion of a sector strengthening stream is welcome, this must resource specialist capability relevant to advocacy for people with an intellectual disability, including communication supports, supported decision-making and inclusive practice. This should go beyond generic professional development to ensure advocates are equipped to work safely, respectfully and effectively with people with an intellectual disability across a range of complex contexts. This includes working with people who are non-speaking or have complex communication support needs, who often experiencing intersecting forms of disadvantage or exclusion from services. There are a small number of advocacy organisations outside of the NDAP who have deep experience in working with this cohort, and we strongly recommend this expertise be promoted and built on through IDAP.
Sector strengthening funding should also support advocates to develop skills in public communication and local media engagement,
enabling organisations to raise awareness of independent advocacy, respond to emerging local disability rights issues, and reinforce advocacy as a trusted and independent function within communities.
Improved data collection by the advocacy sector, and public availability of disaggregated data about advocacy – including on intake of clients and the nature of issues raised – would be welcomed by Inclusion Australia and would significantly assist in our and other Disability Representative Organisation’s systemic advocacy work.
- Prioritise continuity of advocacy relationships across the lifespan
While the Policy Framework acknowledges outreach to people experiencing intersecting inequalities, it should more explicitly prioritise models that support continuity of advocacy relationships over time. This is particularly important for people with an intellectual disability whose informal supports, including family members, may be limited or reduce as they age. Program settings should enable sustained engagement, rather than episodic or crisis-driven interventions.
Continuity should be recognised as a protective factor, supporting early identification of risk, stronger trust, and more effective advocacy outcomes over the lifespan. We strongly believe this should include access to communication support for people who are non-speaking or have complex communication support needs. As we mention in recommendation 4, there are a small number of advocacy organisations, including outside of the NDAP, who have deep experience in working with this cohort, and it is crucial that access to advocates who have this specialist expertise are available to people who require it.
This principle should also inform transition arrangements between NDAP and IDAP. Without explicit safeguards to support continuity of relationships, people with intellectual disability are at risk of experiencing gaps in advocacy support.
- Ensure quality assurance includes inclusive practice
The Policy Framework must explicitly include quality assurance and accountability mechanisms linked to principles of inclusive practice – including supported decision-making, informed consent and accessible communication. These mechanisms are necessary to ensure services can be monitored against outcomes that matter to people with an intellectual disability and their families.
Quality assurance processes should also assess how advocacy organisations engage, including whether people understand their options, feel believed and respected, and are meaningfully involved in decisions affecting them. This should include consideration of how organisations work with families and trusted supporters as part of inclusive and effective advocacy practice.
What we heard from people with an intellectual disability
Two Inclusion Australia members — Parent2Parent in Queensland and SpeakOut Advocacy in Tasmania — facilitated discussions with people with intellectual disability about their experiences and needs in relation to advocacy services. These conversations offer direct insight into how advocacy is currently understood, accessed, and experienced – as well as gaps in service provision – that the proposed IDAP must address.
| Location | Organiser | Number of people with an intellectual disability |
|---|---|---|
| Maryborough, Queensland | Parent2Parent | 6 |
| Gladstone, Queensland | Parent2Parent | 11 |
| Burnie, Tasmania | SpeakOut Advocacy | 8 |
| Total | 25 |
For people with an intellectual disability and their families, effective advocacy is characterised by:
- Accessibility: Information, intake processes and advocacy supports must be provided in accessible formats and through inclusive practice, including supported decision-making and accessible communication approaches.
- Clear pathways: People need to understand what advocacy is, when it can help, and how to access it. Many people with intellectual disability have never accessed advocacy simply because they do not know it exists.
- Local relationships and trust: Advocacy is relational. Trust is built over time through consistent local presence and deep community connection.
- Specialist expertise: Advocacy for people with an intellectual disability is often holistic, involving intersecting systems such as the NDIS, health, education, employment, housing, income support and justice.
- Reach to the most isolated: Advocacy must actively reach people who experience segregation or increased levels of social isolation and limited informal support networks. This includes parents with an intellectual disability; people who live in group homes; or people who are in contact with justice systems.
In this context, it is important to distinguish between:
- Unmet demand: people who are on waitlists for advocacy services; and
- Unmet need: people who have never accessed advocacy, do not know it exists, or cannot navigate access pathways without support.
A program focused only on visible demand risks entrenching inequity by continuing to underserve those who are most excluded.
Limited awareness of advocacy and access pathways
A strong and consistent finding from the consultations held by our member organisations was that most people had little or no awareness of disability advocacy prior to the discussion. When asked whether they had heard of a disability advocate before, the majority responded that they had not, or only had a vague understanding that such supports exist. As one person reflected, “back in my day I didn’t even know there was such a thing as an advocacy service,” while another noted, “a lot of people wouldn’t have even heard of advocacy.”
When participants were asked what they would do if they faced a serious problem that could not be resolved by family, friends or support workers, many expressed uncertainty. In a hypothetical scenario involving a Centrelink payment not arriving, several participants said they would need help but did not know who they would ask. One person responded, “I don’t know who I would ask,” while another said they would go to Centrelink but “couldn’t talk to them on my own.” Others described learning about advocacy only after significant harm had already occurred, with one participant saying, “I wish I had known about advocacy sooner – my life would have been a lot better.”
This highlights the distinction between unmet demand and unmet need. For many people with an intellectual disability, advocacy services are not accessed because people are unaware they exist or cannot navigate pathways to reach them, rather than because services are unavailable.
Advocacy as a safeguard in high-risk situations
Participants described experiences involving police, courts, violence and sexual assault, illustrating the critical safeguarding role of advocacy. One person who had accessed advocacy support in relation to sexual assault and court proceedings described the advocate as someone who “helped me speak up” and supported them through interactions with police and the legal system. Others described using advocacy to respond to inappropriate, harmful or high-risk situations, including one person who stated, “I used one to get out of aged care,” and another who said they sought advocacy support after abuse in a group home. One person said they “used an advocate to help me get my money from the Public Trustees because the Trustees weren’t giving me proper access to my money” and another “used an advocate to know my rights, to know that services and other places were taking advantage of me.”
When asked what mattered most in that experience, one person emphasised that the advocate “treated me pretty good,” listened, respected them, and explained things in a way they could understand. Another said advocacy was important because “sometimes other people will say you’re being silly, but an advocate will hear you out.” This support was particularly important given the participant’s ongoing health issues and the need to repeat their story multiple times.
Other participants spoke about difficulties understanding police processes and interactions. One participant noted that they had “spoken to police many times and have problems with them” and did not understand what was happening. Another explained that without advocacy, providers or other systems “don’t seem to help” and issues “just get bottled up,” whereas advocates “explain things in easy to understand [ways] and it just helps much better.” These accounts underscore the essential role of advocacy in high-risk, high-stress situations where the consequences of misunderstanding or exclusion can be severe.
The needs of parents with an intellectual disability were discussed on page 6 of this submission. One parents who took part in a consultation demonstrated the particular needs of this cohort thus:
“As a parent with disability, you need an advocate at the start because of the idea that people with disabilities can’t be parents, and even if you’re able to you have to show them from the beginning, otherwise you’re at risk of having the child removed.
When that person becomes pregnant you automatically have that fear right from the beginning so you need the advocacy from the start of the pregnancy to the end to educate doctors and other health providers that you can do things, though you might need to do them in a different way and it doesn’t mean that child safety has to come in”
Sustained, independent and specialist advocacy is particularly important for this group due to the multiplicity of systemic risks, as highlighted by this parent, which increases vulnerability and the need for effective advocacy.
Practical barriers to accessing advocacy services
The consultations highlighted that access to advocacy is shaped by a range of practical and relational factors that go well beyond whether a service exists in a particular geographic area. Participants described multiple barriers that would prevent them from accessing an advocate independently, even if they knew such a service was available.
Transport was a consistent issue. People with an intellectual disability across the focus groups spoke about needing someone to drive them to appointments, lacking access to a car, or being unable to attend independently due to licensing or other limitations. While some said they would be willing to attend an advocacy office, they also
noted that this would only be possible with support from others. This underscores that physical proximity alone does not guarantee access.
Some people also described significant difficulty with paperwork and written communication. Many emphasised that if they were to engage with an advocate, that person would need to actively support them to read, understand and complete documents, rather than simply acting on their behalf. Some people spoke about needing information explained clearly, at their pace, and in ways they could understand. One person described valuing an advocate who “sat down with me and went through everything, took the time to explain,” rather than rushing the process.
Reliance on trusted people was another strong theme. Participants commonly identified family members, support workers or other close, unpaid supporters as people they would support them to attend important meetings or rely on to help them understand what was happening. Several people also highlighted the importance of confidentiality, with one stating they preferred advocacy over friends or co-workers because “I can sit down with them and they’ll keep it confidential.” This reinforces the importance of advocacy models that allow for sustained engagement and trusting relationships over time.
Together, these experiences demonstrate that “access” must be understood as a combination of logistical, communication and relational supports. Without these supports being built into program design and accounted for in funding streams, advocacy services may remain functionally inaccessible to many people with an intellectual disability.
Advocacy across the life-course
The consultations also demonstrated that people with an intellectual disability and their families view advocacy not only as a response to immediate problems, but as an ongoing safeguard across the lifespan. As one person reflected, “advocacy always makes you feel heard.”
People with an intellectual disability raised concerns about what would happen in the future if family members were no longer able to provide support. One person spoke about needing someone to “look out for” their family member if parents were no longer there. Another expressed anxiety about needing help “when Mum is gone.” People also spoke about advocacy as something that becomes particularly important during life transitions, such as hospitalisation, employment issues, loss of a parent, or interactions with public trustees.
For people with an intellectual disability, family members often play a critical role in helping them navigate systems, speak up when things go wrong, and ensure their rights and interests are protected. When those informal supports are absent, advocacy may be the only independent mechanism available to provide oversight, assistance and reassurance. As one person observed, “citizen advocacy gives you long-term advocates,” while another noted that advocacy support helped not only them, but also “supports your family as well, and your independence.”
This positions advocacy as a key safeguarding function, rather than a short-term or episodic intervention. It also highlights the importance of stable, trusted advocacy services that can support people through life transitions, including changes in living arrangements, interactions with police or courts, engagement with income support systems, and ageing. Advocacy for people with an intellectual disability must be understood as part of a broader system of long-term rights protection and continuity of support.
What ‘good’ looks like
When asked what they would want from an advocate, participants consistently emphasised relational and process-based qualities rather than technical expertise alone. Key themes included:
- Being listened to and believed
- Being treated with respect
- Having things explained clearly and at the right pace
- Being involved in decisions, rather than having decisions made for them
- Feeling safe and able to trust the advocate.
As one person put it, an advocate should “listen … and do what we say” and “get our whole side of the story.” Another emphasised the importance of understanding what is happening along the way, rather than someone “just doing it without you.” Another person said “with an advocate you can say what you
want and what you want to happen and what you want the outcome to be, and then they can help you work out what might happen with that outcome and it’s all on you rather than other people’s beliefs coming into it.”
People with an intellectual disability also highlighted the importance of choice and control in how advocacy is delivered, including where meetings take place. Some preferred to meet advocates in an office rather than at home, underscoring that flexibility and respect for personal boundaries are important elements of safe practice.
Conclusion
Inclusion Australia strongly supports the development of the new IDAP and welcomes DHDA’s commitment to an outcomes-focused, coordinated, and sustainable model. Our consultations and members’ extensive experience highlight that people with an intellectual disability face significant barriers to accessing advocacy, are at disproportionately high risk of violence, abuse, neglect and exploitation, and often rely on family and other informal supporters to engage with advocacy services. Without intentionally designed, adequately resourced, and inclusive advocacy models, these risks are unlikely to be addressed and opportunities for early, preventative support will be missed.
The extensive experience of our member organisations, one of which (Speak Out Advocacy) is funded through NDAP, demonstrates that advocacy for people with an intellectual disability is relational, resource-intensive, and requires strong local networks and embedded inclusive practice to be effective. Family members and other key supporters frequently play a critical role in enabling access and sustaining engagement, and this relational work must be explicitly acknowledged and resourced in IDAP. Advocacy must be embedded in a broader system of long-term rights protection, safeguarding, and continuity of support.
For IDAP to be genuinely fit-for-purpose, it must reflect these realities in its design, funding structures, workforce expectations, and accountability mechanisms. This includes supporting organisations to undertake proactive community engagement, provide specialist training in inclusive practice, maintain continuity of relationships across the lifespan, and reach people with the highest support needs and those who are socially or geographically isolated. It also requires DHDA to actively invest in complementary communication and engagement strategies to ensure people with an intellectual disability, their families, and the broader disability ecosystem are aware of advocacy and able to access it early, before issues escalate to harm.
Inclusion Australia strongly encourages DHDA to adopt the recommendations outlined in this submission to ensure that IDAP delivers meaningful, preventative, and rights-based advocacy for people with an intellectual disability and their families. Doing so will also strengthen the capability of the advocacy sector and help protect the rights and well-being of people with intellectual disability who face heightened risk due to systemic barriers, gaps in support, and failures across multiple services and systems. We look forward to continuing to work with DHDA to implement these reforms in a way that is equitable, sustainable, and responsive to the needs of people with an intellectual disability and their families.
Appendix A – Lessons from the Disability Royal Commission