Introduction

Disability policy is a term used to describe documented principles of action, which typically aim to ensure the rights and inclusion of people with disability. In Australia, disability policy is normally written by three main actors: Commonwealth Government, state and territory governments and by organisations responsible for supporting people with disability. Broadly, the focus of disability policy is to ensure equal rights, opportunity and inclusion of people with disability. Disability policy includes:

• Strategies which typically centre on improving the lives of people with disability

• Guidelines which articulate the way in which disability policy should be enlivened

• Standards which specify minimum expectations of how services or goods should be provided in accordance with legislation, industry codes and conventions

Unlike other policy areas with well-established academic disciplines such as healthcare and education, disability policy is often considered a field within social sciences or law rather than a separate discipline in its own right (Staupe-Delgado et al., 2022; Lawson, 2020). This means that there may be a tendency for disability policymakers to draw heavily from other fields due to a lack of unified identity or a universally agreed upon specialist language (Staupe-Delgado et al., 2022; Lawson, 2020). Yet, researchers argue that it is crucially important for disability policy to be considered its own discipline in order to pay justice to and better understand the complex interplay of individual, social and systemic factors that impact the lives of people with disability (Lawson, 2020; Staupe-Delgado, 2022). A dedicated policy field allows for focused research, advocacy and policy codesign that directly addresses the needs and rights of the diverse population of people with disability. Further, the fact that people with disability make up the largest minority group on earth means that policies designed with their outcomes in mind should actively promote their inclusion, equal rights and participation in all aspects of life (Harte, 2025).

Common features of disability policy

Some common features of disability policy that have long been advocated for by people with disability, advocates and researchers include:

• Codesign: an approach which actively involves people with disability in the design and implementation of policies that affect them, placing their ‘voice’ at the centre of decision-making (Rieger, 2020).

• Intersectionality: a concept which recognises that disability doesn’t exist in isolation. Rather, disability intersects with other aspects of a person’s social identity. Race, gender, sexuality and socioeconomic status compound the barriers that people with disability face and result in new forms of discrimination (Brinkman, 2020).

• Lived experience: refers to the first-hand knowledge and insights gained by people with disability, and often their families/carers, about navigating daily life with disability (Boxall, 2018).

• Human rights-based approach: recognises people with disability as rights-holders, emphasising their autonomy and need for equal opportunity and participation in all aspects of life (Kayess, 2008).

• Social model of disability: This approach views disability as a social construct, resulting from societal barriers rather than individual ‘impairments’. This approach places advocacy at its centre, promoting change in people’s attitudes, behaviours and environments to advance inclusion (Barnes, 2001).

Features like codesign are increasingly recognised by policymakers as better practice in public policy settings. However, these features are not universally practiced among all policymakers (Fraser-Barbour et al., 2023). Furthermore, there may be significant variance in the way in which the aforementioned features are understood and applied in policy settings. In some cases, a lack of adherence to the principles and practices defined in the above features may result in policy that does not reflect the needs of people with disability and is therefore unlikely to achieve the intended outcomes. Codesign is a prime example of this, as it is often confused with feedback consultation. Within feedback-oriented consultation, relevant stakeholder views are sought but policy decisions are often made by others without consideration of the feedback received (JFA Purple Orange, 2021). In contrast to this form of consultation where stakeholders’ feedback can be downplayed or ignored entirely, codesign is a process whereby relevant stakeholder views contribute not only to the thinking behind decisions but also to making them (JFA Purple Orange, 2021). Feedback consultation tends to be used when policy decisions need to made quickly, whereas codesign tends to be embedded throughout the life course of research and policy development (JFA Purple Orange, 2021). When feedback consultation is misunderstood to be codesign, it dramatically limits policymakers’ understanding of the problems being addressed, which can only be achieved by engaging meaningfully with stakeholders in a collaborative and iterative process (JFA Purple Orange, 2021). Furthermore, as feedback-oriented consultation focuses more on gathering comments on existing designs and proposals, those who mistake this form of consultation for codesign inadvertently limit their potential to be open to new ideas or approaches to addressing social problems (Malcolm, 2022). Consequently, ‘good’ codesign must be present at the start of the research and policy process, playing a critical role in informing decisions about what the problem is that needs to be solved and what appropriate solutions might look like, including levers for change.

Another contentious area known to trigger debate among policymakers pertains to evidence – what it is, what it is not and when and why it should be used. Most policymakers would agree that evidence plays a critical role in the development of ‘good’ disability policy. Evidence helps policymakers understand the nature, timing and extent of social problems and evaluate the potential effectiveness of different policy interventions. However, in public policy settings, ‘evidence’ usually pertains to a mix of political ideology, public opinion and consultation feedback (Cairney, 2016). In contrast, social policy researchers – who conduct research to inform social policy – often define evidence as rigorously tested, validated data and derived from quantitative and qualitative research (Head, 2008). In essence, public policymakers often prefer to draw from a wide range of anecdotal sources, and social policy researchers tend to be more ‘purist’ in their approach – believing that policy decisions should be based predominantly on empirical evidence and data analysis rather than public opinion or political ideology (Cairney, 2016; Head, 2008). Ideally, both approaches should be used to inform policy in order to increase the likelihood of it achieving its intended purpose. Knowledge of the political landscape and public opinion may help to ensure that policy is accepted and implemented in practice, and rigorously tested evidence can shape the content of policy to ensure that the ‘right’ things are considered in the ‘right’ way. One way in which policymakers are slowly starting to improve the rigour of the evidence they employ to inform their policy decisions is through implementation science.

Implementation science

Typically, implementation science is applied at the start of policy design, before work begins, to ensure that all the ‘right things’ are considered and thus the best outcomes achieved (Tabak, 2018). Questions are asked at the very beginning of the policy cycle with the ‘big picture’ in mind. ‘Big picture’ thinking provides insight into the necessary context for the task at hand. It allows one to understand how seemingly isolated policy work fits into a larger ‘policy puzzle’, including possible impacts, and any discrepancies that exist between the individual policy task and the wider context (Tabak, 2018). However, unlike traditional thinking that might focus on policy design or impact (e.g. will the policy achieve its intended outcome?), implementation science specifically examines the way in which processes, strategies and factors may influence how a policy is adopted, integrated, delivered and sustained in real-world settings (Tabak, 2018). For example, implementation science might ask how might this policy fail in practice? Other questions relevant to disability policy that a policymaker might ask through an implementation science lens include:

• What are the precise goals and objectives of this policy? Are they clear, measurable and relevant to the needs of people with disability?

• What underlying assumptions about disability, inclusion or support are being made relevant to the policy goal and objective?

• Does the policy clearly define the roles and responsibilities of different stakeholders (government agencies, service providers, individuals with disability, families)?

• Is the proposed policy topic (or its core components/interventions) truly evidence-based? What research supports its effectiveness in achieving desired outcomes for people with disability?

• Has the evidence been adapted or considered for the specific context of this policy (e.g. Australian context, specific types of disability, rural vs. urban)?

• What are the existing disability policies, legislation and funding models that this new policy interacts with? Are there potential overlaps, gaps or conflicts?

• What is the current political and social climate surrounding disability rights and inclusion? Is there strong political will and public support for the policy topic?

• How does the proposed policy align with broader national strategies (e.g. Australia’s Disability Strategy 2021–2031) and international conventions (e.g. UNCRPD)?

• Which organisations, government departments and service providers will be responsible for implementing this policy? What are their current capacities, resources (financial, human, technological) and existing infrastructure?

• What is the organisational culture like within these implementing agencies? Is it open to change, collaborative, person-centred and inclusive of people with disability?

• Are there established interagency collaboration mechanisms? How well do different parts of the system communicate and co-ordinate?

• What knowledge, skills and attitudes do frontline staff (e.g. support workers, therapists, case managers, educators) need to effectively implement the policy? Do they currently possess these?

• What are the current workloads and pressures of frontline staff who would be responsible for implementing the policy? How might the policy impact their roles?

• What are the diverse needs, preferences and lived experiences of the people the policy is designed to help (e.g. people with various disabilities, their families and carers)?

• What are the potential barriers to access for different people with disability (e.g. geographic remoteness, cultural and linguistic diversity, digital exclusion)?

• How will people with disability and other relevant stakeholders be involved in evaluating the policy to ensure it has achieved its intended purpose?

Essentially, implementation science systematically identifies and categorises factors that hinder (barriers) or help (facilitators) policy realisation. Implementation science also recognises that successful policy implementation requires active involvement and collaboration among diverse stakeholders, including policymakers, government agencies, service providers, community organisations and the ultimate beneficiaries of the policy – people with disability.

Sense checking

Even when armed with answers to questions about policy goals and how the measures supporting them should be implemented, there remains another key practice that is often missed during the development of disability policy – sense checking. This step, typically initiated towards the end of a project, is about checking one’s understanding of the policy problem and the proposed policy solutions (Head, 2008). In essence, sense checking is about asking people that the policy is designed to help, ‘could this work’?; ‘does it make sense’?; and ‘have we considered all the right things’? Sense checking is a critical measure that can be employed early on in policy work to ensure that all relevant information has been considered and more importantly, interpreted correctly. It goes beyond engaging with stakeholders, which is typically used to inform thinking about a particular issue and how it can be solved. Sense checking involves checking if a policy solution is likely to work. It is an early attempt to rectify issues before they become problematic and costly.

People with lived experience of the contexts that policy is designed for are critical in the sense checking process. They know the existing barriers and enablers for policy implementation that already exist in these contexts and can inform decisions about whether or not policy solutions are likely to work. For disability policy, it is important to, first and foremost, include people with disability in ‘sense checking’ discussions. However, it is also very important to include the staff who support them, and also any other people who are significantly involved in their lives. Often, frontline staff who provide direct support to people with disability are not involved in discussions designed to inform policy; rather, management and senior leaders within organisations tend to be the people involved in these critical tasks (McEwen, 2022). Consequently, a valuable perspective is often lost that could provide a deep, firsthand knowledge about daily life in disability service contexts, which are frequently the focus of disability policy (McEwen, 2022). Frontline staff usually have an intimate understanding of the practical realities, challenges and successes experienced by people with disabilities in their everyday lives. They see how policies are played out in practice, and thus, often possess excellent knowledge about what does and does not work (McEwen, 2022).

Sense checking can also include piloting or testing a policy solution within the contexts it is designed for. Essentially, this approach allows policymakers to:

• Identify and mitigate unintended consequences

• Gather real-world feedback about what does and does not work

• Refine and optimise policy design

• Test feasibility and scalability

• Reduce risk before the cost of full implementation

Sense checking may also build trust and coalition between policymakers and those likely to be impacted by the policy; it may also build rapport and understanding among those responsible for its implementation. Essentially, sense checking provides an opportunity for policymakers and the intended recipients of policy to share information, test understanding and make clear policy intentions (Harkness & Benda, 2020). However, it is critical that sense checking is done reliably and authentically, otherwise the credibility of policymakers may be called into question (Cairney, 2016). Reliable, authentic sense checking can be achieved by policymakers assigning adequate time for the process, limiting the need to rush and apply pressure to those involved. Avoiding rushed timelines for sense checking policy knowledge and proposed policy solutions are especially important for people with disability, who may require additional time to engage meaningfully in the process (Fraser-Barbour et al., 2023). This is particularly important for individuals with ‘less visible’ forms of disability, including those who identify as neurodivergent. Policymakers should also ensure they check with stakeholders about what they need to engage meaningfully in the sense checking process, as they may require resources or adjustments, including:

• Information and time ahead of meetings

• Time during meetings to process questions and clarify meaning before responding

• A clear order of communication for meetings to ensure they have equal opportunity to contribute

Building coalition

Stakeholder analysis is often where engagement with the individuals who are likely to be impacted by policy begins and ends. However, for policymakers who genuinely want to see their policy goals realised, one needs to move beyond engagement and towards ‘building coalition’. Building coalition involves policymakers taking stakeholders ‘along the policy journey’ with them (Ansell & Gash, 2008). It’s about engaging often to share information and to create an authentic dialogue rather than engagement being centred around specific feedback points in the policy lifecycle. Policymakers need not wait until they have something significant to share before they engage with stakeholders. By sharing information little and often, policymakers allow people to see them as transparent and collaborative, and there are no surprises when policy is finally released. This approach may forge trust and save time when policy is disseminated, as key groups of individuals will already be aware of its content and will therefore be less likely to contest it.

Separating the part from the whole

Sometimes, public policy problems are approached in isolation, without considering the full context of issues that intersect with and compound the problem the policy is attempting to solve (Cairney, 2016). However, in public policy, the problems that policymakers want to solve are deeply intertwined with broader social, economic, cultural and political issues. For example, poverty, often experienced by people with disability around the world, is frequently linked to unemployment, poor health, lack of education and housing insecurity. Further, mental health issues can be exacerbated by social isolation, financial stress or discrimination. Addressing one part of a public policy problem without considering its interconnectedness with other parts can result in policy failing to address its intended outcomes (Cairney, 2016). This may result in misconceptions that the policy problem at hand is not solvable or that the policy levers prescribed to address it do not work.

It is also important to consider that people with disability, like all people, need to be viewed holistically – they too have complex lives, relationships and needs (Fraser-Barbour et al., 2023). Disability is only one part of a person’s identity. Therefore, by focusing on just one aspect of a person’s identity, such as job readiness through the provision of, for example, training, without addressing other barriers to employment, such as a lack of available childcare or transportation, policy solutions are unlikely to prove successful.

Knowledge mobilisation

Ensuring that a policy is ‘mobilised’, that is, it is realised in practice, can be challenging. Even when a policymaker considers implementation, sense checks policy approaches with key stakeholders and ensures that the policy is progressed in the context of other interconnected social issues, it can still fail to be realised in practice. Consequently, policymakers must consider how they intend to ‘mobilise’ policy, a task which is heavily reliant on drawing on relationships fostered through coalition building activities, to ensure that policy is widely understood. In the context of disability policy, being ‘widely understood’ is heavily dependent on the way in which information is presented and disseminated. Information should be ‘in Plain Language’, avoiding jargon, acronyms and overly complex sentence structures (Harpur & O’Toole, 2022). However, Plain Language is not just useful for people with cognitive or intellectual disability, it is also important for anyone who will be responsible for enlivening policy in some way. Evidence suggests that approximately 44% of Australian adults (aged 15–74) have low or very low literacy skills (Australian Bureau of Statistics, 2013). Further, approximately 22.3% of Australians speak a language other than English at home (Australian Bureau of Statistics, 2022). Therefore, one could argue that Plain Language policy is not only beneficial for people with cognitive or intellectual disability, but for everyone.

Guidance material can also be useful in mobilising policy knowledge. However, traditional guidance material, like policy, is in written formats. It may be useful for policymakers to consider other modes of guidance that are more accessible for a wider variety of individuals. For example, guidance can be provided in video format, podcast or even within interactive platforms that combine these modes of communication in a variety of language options. However, it is important to remember that not everyone has high levels of digital literacy, and therefore, it is critical to keep information as simple and accessible as possible (Harkness & Benda, 2020). Testing information in a variety of formats and with a wide variety of people is a good way to tease out any issues with the accessibility of content before disseminating policy and any associated guidance material.

Evaluation

Evaluation is key to ensuring that policy is achieving its intended outcomes (Cairney, 2016). Without evaluation, there is a risk that policy will be considered as achieving its intended purpose or ‘working’, when it may not be. Even when policy appears to be yielding positive results, there are always lessons that can be shared about how future policy can improve. Further, evaluation may shed light on positive practice for policy design and implementation that should be tracked for replication (Head, 2008). In essence, by investing in evaluation, policymakers learn about what did and did not work during the policy design process and what is and is not working in practice. However, evaluation is often missing from policymaking, resulting in many questions about implementation and outcomes left unanswered (Cairney, 2016; Head, 2008).

In the context of Australian disability policy, few evaluations have been conducted over time; hence, little is known about their impacts on the lives of people with disability. This is largely because data on issues such as disability education and employment can be complex and sometimes confusing due to various factors, including the diversity of people’s disabilities, differences in reporting methodologies and challenges in accessing and analysing data. Consequently, evaluation that focuses on the lived experience of people with disability is of critical importance, as it allows for a deeper exploration of issues which are enabling or disabling people with disabilities from living a ‘good’ life (Rieger, 2020). These insights allow policymakers to make inferences about the impacts of policy, and the factors which may or may not be working and in what contexts.

Conclusion

Ultimately, the path towards effective disability policy rests not in one single act, but a continuous, adaptive and human-centred process. It begins by elevating the centrality of lived experience and recognising it as the foundational knowledge that informs every stage. Qualitative expertise is then systematically integrated through genuine codesign and rigorous sense checking, ensuring that solutions are not only theoretically sound but also practical and aligned with the real needs of people with disability. Successful policy is also a collective effort, requiring broad coalition building to achieve a holistic vision that deliberately aims to move beyond fragmented support to create integrated, person centred systems. Finally, the sustainability of these efforts depends on a robust cycle of learning – leveraging implementation science to translate policy into practice, engaging in active knowledge mobilisation to share what works and building a strong framework for evaluation to measure real-world impact and drive ongoing improvement. This comprehensive approach transforms policy from a static document into a dynamic tool for fostering empowerment, inclusion and equity.