Introduction

Including expertise from the lived experiences of people with disabilities in the design of policy and service systems, as well as the delivery, review and governance of services, is a growing expectation of communities and regulatory authorities. This chapter reviews the various structures, such as co-designed projects, advisory bodies, board membership and Disabled Person’s Organisations (DPOs), that aim to include or amplify the perspectives of people with disabilities about disability policy and services. It considers the types of adjustments needed to facilitate inclusion of people with disabilities and the skills to ensure people’s voices are heard when they are present. The chapter concentrates on people with intellectual disabilities for whom the design of inclusive structures and support for meaningful participation are particularly challenging. Too often this group are either excluded from advisory bodies or when they are present not sufficiently well supported to participate. Although the structures vary, there is much similarity in ways of working that optimise inclusion and support participation. This knowledge is relevant to project workers, service managers and direct support workers who may be expected to set up consultative structures, lead co-designed projects or support individuals who are members of advisory groups or governance boards. For some workers this type of work may be their primary responsibility while for others it is incorporated into aspects into their usual work.

Working Together on Policy and Service System Issues

The United Nations Convention on the Rights of Persons with Disabilities (CRPD) is often seen as the landmark that changed ideas about respecting the voices of people with lived experiences of disability (United Nations, 2006). It certainly drew governments’ attention to the value of working together with people with disabilities on broad system issues, that extend beyond their own personal lives. Article 4.3, for example, mandates that all signatory countries should actively consult with and involve people with disabilities and their organisations in the “development of legislation and policies … and in other decision-making processes concerning issues relating to persons with disabilities …” (CRPD, Article 4.3).

However, well before the CRPD, the international disability and self-advocacy movements had organised themselves to influence disability policy and services. In 1981, for example, Reinforce, the first self-advocacy group of people with intellectual disabilities in Australia, formed in Melbourne. It aimed to persuade governments to close institutions, fight for the recognition of the rights of people with disabilities and speak out about injustice. In the absence of more organised consultative structures, Reinforce’s initial mode of influence was direct action. As one of the founding members recalled,

In the early days like in the 1980s well, if you wanted to see a particular person we’d just go up there and sit outside their office, wait for them … did things like occupy the office of the Minister for Community Services [or] squat at a government owned house … to protest the Health Commission’s bid to reclaim the house (Henderson & Bigby, 2016, p. 55).

As governments recognised the value of hearing the perspectives of people with disabilities, the focus shifted to finding ways for them to work together rather than confronting each other. Reinforce and other self-advocacy groups became “representative bodies that could, when necessary, liaise and consult with government representatives and other service providers” (Henderson & Bigby, 2016, p 55). For example, one member,

was the representative on the 1987 steering committee that oversaw consultations about the Ten Year Plan for the Redevelopment of Intellectual Disability Services. Meanwhile, two others attended meetings of another state advisory committees at Government House (Henderson & Bigby, 2016, p 58).

The types of structures established and commitment to involving people with disabilities and their representative organisations in design of policy and services have grown exponentially since Australia signed the CPRD. Their involvement in all aspects of disability policy is now firmly entrenched in Australian federal government policies. For example, Australia’s Disability Strategy 2021–2031, which envisions a more inclusive and accessible society, acknowledged the importance of expert knowledge by people with disabilities from their lived experience to achieving the Strategy’s inclusion goals. It committed to ensuring that people with disabilities had a ‘central and active role’ in all aspects of its implementation, monitoring, reporting on outcomes and development of future policy directions (Commonwealth of Australian Department of Social Services, 2021).

The National Disability Insurance Agency (NDIA) similarly aims to put people with disabilities at the centre of all its research activities and evaluations of service design and delivery (NDIA, 2022). This intention is reflected in the National Disablity Insurance Scheme (NDIS) practice standards which expect NDIS-funded organisations to include the input of people with disabilities in governance and have other ways of involving them in the development of organisational policy and processes about service delivery and safeguarding. Since 2021, the NDIA has been leading co-design activities with representatives of its Independent Advisory Council, the Department of Social Services, and 27 disability and carer organisations to identify priorities for operationalising this commitment and ways for people with disabilities and bureaucrats to work together to develop trust and improve scheme processes. One outcome is agreement about the need for a strategic approach to develop and implement meaningful stakeholder involvement across the disability sector.

Co-design is becoming the common term for involving people with disabilities and tapping into their expertise. Very simply, it is a process where the people likely to be affected by a policy or service can contribute their knowledge and perspectives. Co-designed projects require time, thoughtful planning and involvement of people with disabilities in all aspects, that is in defining the problem to be addressed, making decisions about how to develop and deliver solutions, and evaluating outcomes (Reiger, 2020). Effective co-design projects require similar ways of working and support strategies to those necessary for including people with disabilities in structures such as advisory bodies or boards which are discussed in the later part of the chapter.

Why Involving People with Disabilities in Policy and Service Development Matters

Using the expertise of people with disabilities to shape policy and services is important for furthering the human rights of people with disabilities. It is perceived as helping ensure the priorities of people with disabilities drive change, that services are more responsive, benefiting those involved and positively impacting on community attitudes about people with disabilities. From a disability rights perspective it is the right thing to do, although there is only limited evidence about achievement of some of its expected outcomes.

Membership of a self-advocacy group has personal benefits, including learning the skills to speak up, exercising power in democratic group processes, self-confidence, a sense of belonging or purpose, friendships and opportunities for employment (Anderson & Bigby, 2017). Members often have opportunities to participate in consultative and advisory groups, or community education initiatives that influence government policy, and community or professional attitudes. People gain self-esteem and status from these public-facing activities, through, for example, being listened to as an expert by others who are experts in their own fields. This helps to extend their social identities beyond the group to one of ‘expert’ or ‘teacher’. As one participant said,

I like talking to the people … I do a good job when I tell them the things on paper … I have a practice with [supporter] … then I can tell people all about it … what learning disabled is about. I think those people … those that hear me talk … talk about the things, they like it …it’s really quite … really. Interesting they say. (Anderson & Bigby, 2017, p. 6.)

As well a sense of doing things that matter, these types of experiences also help people to become well known to others in the wider disability sector and increase their social networks. As one member of Reinforce said,

We achieved so much … Well, it changed a bit of my life, that’s for sure … fighting for rights more, getting somewhere, letting the people out there know that we’re not as dumb, as stupid, as what they think we are, that we’ve got brains, and we’re just as smart as a person next door. (Frawley & Bigby, 2015, p. 259)

The opportunities for multiple social identities that participation in advisory groups and being listened to as an expert offer are rarely accessible to people intellectual disabilities whose diagnosis appears to run deep in terms of social exclusion and negative perceptions. Inclusion has implications that can stretch beyond the personal, in changing not only the way people see themselves but the way they are seen by others.

As the excerpt above indicates, including people with disabilities in shaping policy and services helps to break down stigmatised community perceptions that devalue people with intellectual disabilities, often casting them as vulnerable and dependent. Participation in public-facing advisory groups, events and presentations at high-profile forums such as hearings of the Royal Commission into the Abuse, Neglect, Exploitation and Violence against People with Disabilities or community or professional education sessions highlights people’s expertise and challenges negative perceptions. It can mean professionals come into direct contact with people with disabilities on an equal basis as members of a committee rather than the usual unequal relationships, which is also useful for breaking down negative stereotypes.

The value of including people with disabilities as members of boards of governance has been strongly asserted in various Australian public forums including the Disability Royal Commission. There can be little doubt that people with disabilities can enrich board discussions, bringing with them not only a lived experience perspective but also a range of other skills and experiences. Their inclusion can also symbolise the inclusive mission of organisations. Although there is some evidence from other sectors about the benefits of diverse board membership and some research is in progress, there is no evidence beyond anecdotes that substantiates claims that board members with disabilities improve the quality or safety of an organisation’s services (Hough, 2022).

Suggested benefits of including people with intellectual disabilities in consultative structures are that their lived experiences act as an ‘early warning system’ about a range of problems in complex service delivery systems. However, the benefits are often only apparent from the negative impact when groups are left out (Henderson & Bigby, 2018). One example of this is the NDIS. Its design and early implementation included few people with intellectual disabilities and little representation of issues relevant to them by others. As a senior federal bureaucrat pointed out people with intellectual disabilities and those representing their perspectives were largely absent in the consultation and planning processes of the NDIS compared to other groups,

Probably over-represented and disproportionately represented were people in wheelchairs with physical disabilities who were resourceful, well resourced, articulate, brought to the table a whole set of life experiences, the capabilities and capacities that in fact people with intellectual disability don’t bring … [people with intellectual disabilities] weren’t represented in proportionate numbers … things that were part of original scheme designand quality and practice definitely didn’t resonate and weren’t sufficiently nuanced … the original membership of the Independent Advisory Council… There was one woman, a fantastic woman … she was a mother, a carer,a provider and her son had a significant intellectual disability. But that was a sole voice (Bigby, 2021, p. 262).

As this quote hints the NDIS failed to incorporate issues of particular importance to people with intellectual disabilities—there were no provisions for brokerage or independent advocacy, in-depth person-centred planning or supported decision making or recognition of the long-term or intensive support many people would need to implement plans. This has had significant cost to both the scheme and people with intellectual disabilities and their families.

The design of the NDIS assumed that participants were savvy consumers who could readily communicate their perspectives and preferences. This proved to be problematic for people with intellectual disabilities, particularly those with severe or complex disabilities. The negative outcomes of failing to include this group from the very beginning of the NDIS should inform planning and development of structures for involving people with disabilities in policy or service design, that is that people with intellectual disabilities must be included from the outset. This is a key principle of co-design but too often structures, ways of working and agendas are developed by others without seeking the expertise of people with intellectual disabilities, and consequently the design fails to facilitate this group’s inclusion.

Structures for Involvement in Policy and Service Design

Effective structures, adjustments to ways of working and good support are all critical to meaningful and satisfying participation. Various structures are used to involve people with disabilities in policy and service design. Some involve membership of groups, representative bodies, boards or co-design projects while others are part of the work of Disabled Person’s Organisations or self-advocacy groups. Some are sponsored by the various levels of government and others by disability service providers or commercial organisations.

Advisory Bodies, Representative Groups and Governing Boards

Traditional structures are advisory or consultative groups or committees established by governments. These include, for example, at the state or national level variously named disability advisory or steering councils or committees, such as the Victorian Disability Advisory Council or the NDIS Independent Advisory Council. All levels of government, types of statutory agencies and private corporations use advisory or consultative structures to engage with people with disabilities. Some structures are focussed exclusively on disability-related issues, such as the inclusion or disability advisory committees of major cities, or transport or police authorities. For example, the City of Sydney’s Inclusion Advisory Panel, NSW and Victoria’s Accessible Transport Advisory Committees and Victoria Police Disability Portfolio Reference Group. Other structures include disability as part of a broader mandate for consumer or community engagement, such as Local Government Community Engagement Advisory Committees, or Hospital Consumer and Community Advisory Committees. These types of structures may be ongoing, time-limited or convened for a special purpose. All members may be people with disabilities or members may be a mix of people with disabilities and those with expertise about a particular aspect of policy or other lived experiences. Only one or two members of groups are likely to be people with intellectual disabilities and they are seldom all or a large group of members.

Other types of advisory groups are those that provide advice to boards of service delivery or advocacy organisations. These are known as self-advocacy, client, service user advisory groups or councils and are likely to have a means of directly communicating their views to senior executives or boards. Members are usually all people with disabilities who use a service. They may be supported to participate by staff employed by the organisation or by independent external professionals. For example,

  • One of the largest disability support providers in Victoria has its own self-advocacy group which meets regularly to discuss issues of importance and interest to service participants. It provides feedback to the organisation about service quality as well as campaigning about local issues such as accessible public transport. The group reports directly to the board through the chief executive officer.

  • A small Sydney-based service which matches people with intellectual disabilities with volunteers who have shared interests, has a user-led group which helps to identify events that might appeal to participants and suggests changes to programme processes. It is facilitated by a volunteer and staff member.

  • The board of a national organisation that represents issues for people with intellectual disabilities has an advisory committee made up of representatives from its member organisations in each State and Territory, who provides expert advice on policy and strategy from a lived experience perspective.

In some instances, the way advisory bodies are structured can distance people with disabilities from decision making power, reducing the potential for influence. An example of this is the NDIS Intellectual Disability Reference Group, which has members with intellectual disabilities. The reference group provides advice to the Independent Advisory Council which in turn advises the board of the NDIA.

Boards are governance bodies of not-for-profit, commercial or government agencies that hold decision making powers and influence the strategic direction of organisations. As a group, people with disabilities are very underrepresented on boards, and very few are people with intellectual disabilities. Increasingly, large disability service organisations and national bodies include people with disabilities on their boards. For example, the boards of Yooralla, Life without Barriers, Achieve and the National Disability Insurance Agency all include people with disabilities. Sometimes people with physical or sensory disabilities are joining boards of organisations which predominantly serve people with intellectual disabilities, which raises interesting questions of the transferability of lived experience expertise.

Disabled People’s Organisations and Self-advocacy Groups

DPOs are led by people with disabilities, who are also the majority group on decision making structures such as boards or committees. In Australia, some DPOs are funded as peak bodies to represent the interests of coalitions of smaller DPOs. Governments use these types of representative groups as conduits to consult with smaller DPOs or self-advocacy groups about policies, programmes or services. As well as reacting to government requests, peak bodies create their own strategic directions for changes in disability policy or service provision. Some larger DPOs are not peak bodies but represent sub-groups of people with disabilities and undertake activities including individual training, systemic advocacy and representing their membership on advisory bodies.

The NSW Council on Intellectual Disability (CID) is one of the few DPOs that solely represents people with intellectual disabilities. The chair and a majority of board members are people with intellectual disabilities. As a matter of course, CID employs people with intellectual disabilities to work on all its projects, and supporting their participation in advocacy, project and governance activities is ‘core business’ (Bigby & Henderson, 2018). The organisation campaigns for change on a small number of issues at a time, generating its own initiatives as well as participating in advisory and consultative processes. This targeted approach allows for deep and carefully paced engagement of people with intellectual disabilities which enables their involvement as leaders and spokespeople in the work the organisations work (Simpson & Chan, 2021).

Most self-advocacy groups in Australia are small with membership drawn from their local area and governed by their members. Some are independent and others sponsored by large disability service or advocacy organisations. They are sometimes involved in grassroots advocacy seeking to change local conditions or nominating their members to sit on representative bodies such as local government community engagement committees.

Inclusive Ways of Working and Supporting Effective Participation

These different structures offer opportunities for people with disabilities to contribute to policy and service design, governance or project activities. The success of their inclusion depends on effective processes for supporting participation and contributing their expertise ways of working and practices of support. There is very little evidence about these things in the context of advisory structures or boards, particularly about inclusion of people with intellectual disabilities. However, learnings about inclusive ways of working from inclusive research and support practice in self-advocacy groups provide some useful directions.

The Right Conditions

The histories of self-advocacy organisations provide guidance on involving people with intellectual disabilities in policy and service design. They show that the power to influence policy has been dependant on:

  • adequate and certain funding to groups to enable long-term strategic planning about targets for change and offering secure long-term employment for supporters;

  • quality of support, to enable participation by members and ensure a sense of ownership and control; and

  • a supportive stance by government that means a willingness to listen and act on issues raised.

Yet as the history of Reinforce in Victoria, for example, shows too often funding is time-limited, tied to projects determined by governments or granted at the last minute at the end of financial years. Inadequate and short-term funding results in turnover of supporters and inconsistent quality of support, which varies from exploitative to excellent. Change in priorities or political values mean the governments’ stances range from supportive to disinterested. History shows too that even when governments or bureaucrats are enthusiastic about hearing from people with intellectual disabilities, as they were in the 1980s, the inexperience of those involved can mean that at times self-advocates attend advisory group meetings that are inaccessible and so full of jargon and complex language that they understand little of what goes on and barely participate (Henderson & Bigby, 2016).

History makes it clear that if people with intellectual disabilities are to contribute to policy and service design, they require funding to employ qualified staff to assist with determining strategic directions, responding to government agendas and supporting individuals to participate in consultative structures. This fundamental infrastructure continues to be absent from many DPOs and self-advocacy groups in Australia (Bigby, 2020; Henderson & Bigby, 2020). It means that too often the design of advisory structures and support rests with inexperienced staff from government or service providers rather than those with expertise about what is necessary from lived experience.

Building Capacity of Individuals and Organisations

Many people with intellectual disabilities who are involved in advisory bodies or who are leaders in DPOs developed their knowledge about rights and skills in speaking up in public as members of small self-advocacy groups. For example, a cross-national study showed that the self-advocacy groups were often a first step in the process of developing social and political awareness and engagement on the part of adults with intellectual disabilities. Having the opportunity to write one’s own identity script (e.g. as a teacher) and embrace the changes associated with this may in fact be an essential step towards confident engagement and participation with the community outside self-advocacy groups (Anderson & Bigby, 2017).

Over the past ten years, since inception of the NDIS, there has been emphasis on building the capacity of people with disabilities to engage in all aspects of community life. This has meant more funding and opportunities to participate in self-advocacy and peer support projects and some targeted projects to increase the pool of people with interest, skills and confidence to join advisory bodies. An example is ‘Voice at the Table’ led by the Melbourne-based Self-Advocacy Resource Unit. This project aims to increase numbers of people with intellectual disabilities on boards and advisory bodies by building the inclusive capacity of government and community organisation through training to people with disabilities and support workers (Voice at the Table, n.d.). It also publishes ‘top ten tips’ as a practical guidance to some of the issues to be considered in supporting meaningful participation. Action research by the Sydney-based organisation Side-by-Side Advocacy is exploring the experiences of people with intellectual disabilities on boards and when completed will provide evidence-informed guides to inclusive practices for boards (Curryer, 2023) .

Significance of Attitudes and Supporters

The interim findings of the Side-by-Side Advocacy project accord with findings from the very limited research about the inclusion of people with intellectual disabilities on advisory groups that concrete actions are needed to support inclusive ways of working, some people require individual support to participate, everyone is responsible for supporting inclusion and concerns about things such as capacity act as barriers to inclusion (Curryer, 2023; Frawley & Bigby, 2011).

Supporters play important and complex roles in advisory structures and DPOs. Most of the understanding about their roles come from research with self-advocacy groups. This shows that supporters confront difficult challenges posed by power imbalances between them and the people they support. They are continuously juggling to avoid their roles as facilitators spilling over into ones of leadership and control. This requires transparency about decisions and processes and self-reflection about who is setting and driving agendas. As Buchanan and Walmsley (2006) suggest, the inevitability of the power imbalance means sophisticated skills are necessary to achieve participatory outcomes. Supporters must create a supportive space, switching between working in the background creating the right conditions for participation, more directly supporting people, and at times ‘writing the script’ to enable people with intellectual disabilities to participate in personally powerful ways (Anderson and Bigby, 2020). As the work of CID demonstrates, support to participate must be an integral part of inclusive structures or organisation, rather than added on as an afterthought.

In a study of self-advocacy groups, for example, members and workers saw themselves as working in partnership, having valued and complementary skills. One self-advocate suggested the rationale for the division of tasks was driven by the respective strengths of members and supporters: “We leave it all to the workers here in the office, they know who they’ve got to ask when we need it … I’ve got my other things to do really. I think I’m better for speaking up at meetings and such … I wouldn’t have a clue what to do about the other things [the support worker] does” (Anderson & Bigby, 2020, p. 7).

Inclusive Ways of Working

Knowledge about the adjustments needed to make advisory structures or boards more inclusive for people with intellectual disabilities comes from both research and practice wisdom. There is no formula, as a key feature is adjusting processes to ensure they take account of the needs of every participant. The following aspects of meetings, for example, need attention.

  • Pace: Pace of meetings or projects should be adjusted to ensure that everyone has the opportunity to follow the discussion or activities and can be engaged in what is happening. For example, care might be taken by the chair to slow the pace of the meeting and the speed people talk or jump from topic to topic. The length of meetings might be reduced to take account of a person’s shorter span of attention or the need to rest given the energy needed for some people to concentrate. Short and frequent breaks might be needed to give time for a person to process information or think about or talk through their views on an issue. Hand-held coloured paddles (stop, slow down) are used in some groups so that participants can easily signal the need to change the pace or for a break. A talking stick, that signals who has the floor and should not be interrupted, is another strategy for attending to issues of pace and contributions.

  • Chairing and preparation: The chair might adjust a meeting’s style by including more small group activities that make participation easier for some people or use round robin techniques to ensure everyone can speak. They should tightly enforce protocols about time frames for putting items on meeting agendas or circulating papers so that everyone has time to adequately prepare for each item with a supporter if they need to do so. In project groups, especially if there are long gaps between meetings, members should be reminded about project aims, stages and decisions already made by recapping on progress at the start of meetings and summarising at the end. Careful processes are needed for introducing new members to a group through induction processes and at meetings so that everyone is familiar with the project or groups’ purpose and the roles of others in the room.

  • Accessible papers and communication: Information about time and place of meetings, procedures, agendas, issues to be discussed and decisions to be made all need to be understandable to everyone participating. Writing in plain English (see, e.g. the Australian Government style manual, n.d.) is a universal approach to making information more accessible. Some people with intellectual disabilities may also need information to be translated into an easy English format. However, individualised support to understand documents may also be required even if these types of adjustments are made. For people with vision impairments, care must be taken in designing and formatting documents to ensure they can be accessible through technologies such as screen readers. If people have communication difficulties, the right technology should be in place to assist others to understand their communication, through captioning or sign interpreters.

  • Milieu: The behaviour of everyone involved in a project or meeting should support the inclusion of people with intellectual disabilities, both during formal and informal parts of meetings. A key finding about experiences of people with intellectual disabilities on government advisory bodies was the positive impact of collegial relationships and their role in providing a social context conducive to the expression of a range of personal and political beliefs (Frawley & Bigby, 2011).

Individual Support

In addition to adjusting ways of working, some people with intellectual disabilities require individual support to prepare for and participate in meetings. The type and intensity of support always depend on the needs and preferences of the person themselves. In general, it should reflect the following characteristics:

  • Role clarity: Supporters must be clear about their role before and during meetings. Usually, supporters are not also members of the group and their views about the matters being discussed are not relevant. They should be fully briefed about expectations of their role by their employer, the chairperson, or the project lead, as well as the person they are supporting. It is also important that other meeting participants are clear about supporters’ roles as it can be confronting if supporters overstep their role by participating in a meeting or are clearly not providing good support. In either circumstance it is important other participants feel comfortable identifying problems and know who to take them up with.

  • Tailored to the person: Support must be tailored to each individual and provided in the context of knowing the person and a trusting relationship. Supporters need to know the person they support, their style and personality, for instance, as well as knowing things about them, such as their comprehension, communication preferences, type of technology or other equipment they use and their other support needs. The required values of respect, dignity, choice and control, and person-centredness and strategies to support individual participation are similar to other areas of practice, discussed in this book such as Active Support and Supported Decision Making.

  • Communication and scaffolding information: Supporting the person to understand the issues being discussed is central to enabling them to consider their own perspective about issues and deciding what they want to contribute. Like writing in plain English or analysing tasks, a supporter needs to break down information into smaller parts and assist the person to go through the information one section at a time. Following the steps of supported decision making, they may assist the person to explore alternative views about an issue or think about the person’s own experiences that are relevant to the topic. Supporters should support an individual to understand options and bring together all the information they need to make choices about issues. This process may result in capturing the key things a person wants to say in words and pictures as prompts for them during the meeting. Good chairing of a meeting or project facilitation may reduce the need for individual support during a meeting, although supporters may play a role in prompting a person to speak on a particular item. If unexpected issues are raised by others in a meeting, it may be appropriate for a supporter to quietly talk to a person during a meeting or call for a short break.

  • Reliability and time: Reliability on the part of supporters is important. Good support relies on relationships and knowing the person, which means supporters are not easily interchangeable. If a supporter doesn’t show up, they simply be replaced, but the effects are detrimental, as they will be unfamiliar with the person or lack knowledge of the context of support. Good support takes time but as it is difficult to estimate how much will be needed, budgets and support workers need to allow for flexibility.

Attending to Practicalities

  • The practical aspects of getting to and from meetings, into buildings and rooms, accessing digital platforms and papers, being paid and getting refreshments one can eat are fundamental to good inclusion. Attention to these types of things helps people with disabilities to be confident about their contribution, be seen as equal members of a group, and arrive on time and prepared.

  • Planning: All the practical aspects of meetings need attention well ahead of time. Planning must take account of each person’s individual needs; it means foreshadowing the things that can go wrong and monitoring to check things are going as planned. Clarity about who is leading and coordinating access in general and each person’s support is important, as responsibility for different practical aspects may lie with different people across an organisation. The person with a disability must be involved in planning, but negotiation and coordination of these issues should not be left to them unless it is their preference. Importantly, there needs to be one point of contact to call if things do not go according to plan.

  • Getting there: This requires thinking about the venue and time of day a meeting will be held and the format (face to face, online or hybrid). All these decisions have pros and cons, but the guiding principle should be what will support the maximum inclusion of all participants with disabilities rather than what will best suit the organisation convening the meeting. If the meeting is in person, decisions should be made with each person about the best form of transport to the venue for the time of day. People will need to know about things such as the best entrance to the building, where a driver should drop them off, or which exit to take from the train station. They may need to have been briefed about the location of the meeting room, and any security arrangements such as do they need to check in and get a pass, and how long these procedures are likely to take. For online meetings, testing that the platform and all the technical aspects of connecting, seeing, hearing and talking are important, including compatibility of computer systems, settings and placement of web cams.

  • Access to meeting papers and other documents: Documents are increasingly written and stored electronically as printing and posting paper is no longer usual practice. Such changes pose challenges of setting up secure and accessible online places from which papers can be accessed. Assumptions about digital literacy for navigating online repositories, easy recall of passwords and ownership of smart phones for verifying identities need to be identified and managed by meeting organisers with participants.

  • Payment: Payment for time and expenses are important ways of valuing the contribution of people with disabilities that signals the importance of their expertise. As with access to papers, the manner of payment must be clear and negotiated rather than taken for granted. For example, will the organisation give the person vouchers to avoid the need to pay costs upfront, does the person need to provide receipts and if so, in what format to whom and when, or is there a daily allowance paid automatically? Do they need to claim payment for attendance or are they automatically paid, how do they claim extra time, when will they get paid? If the person receives Centrelink payments do they need support to record and report payments to avoid overpayments? If a person needs individual support to travel, prepare and participate, or for personal care during a meeting, it needs to be clear who is responsible for the costs of this. Should this come from a person’s individual support package or is it part of the cost of inclusion that an organisation should bear? These questions are not always clear but need to be asked as part of planning for inclusion.

  • Refreshments: Sharing food and drink is important in creating a collegial environment. Planning with people about their individual dietary requirements is as important as other practical arrangements. This means identifying needs, ordering food, checking its delivery and ensuring correct labelling when it is served.

Avoiding Tokenism and Other Unresolved Issues to Consider

As already indicated there is little evidence about the participatory experiences of people with disabilities on advisory bodies and governing boards. Nor is there much knowledge about effective structures and ways of working for putting into practice government intentions about the people with disabilities play a central and active role in policy and service design. The little evidence there is, and indicators from other strategies for tapping into the expertise of people with intellectual disabilities such as inclusive research, point to the complexity of the task and failure to realise ambitious intentions.

For example, respondents to a UK survey of participants in advisory groups, research projects and service user groups reported they were extremely keen to be involved but were often poorly supported to do so. In many cases their basic access requirements were either not acknowledged or met. For example, resources such as easy read documents, accessible transport and venues were not consistently available. Unreliable supporters, who did not turn up, only stayed for part of an activity or meeting or failed to work on meeting preparation all contributed to participants’ frustrating or unsatisfactory experiences (Batty et al. 2022). Examples from inclusive research projects indicate that people with intellectual disabilities employed as co or peer researchers often feel underprepared and disappointed with both their experience of working on projects and the outcomes of research (Southby et al., 2022). These types of experiences are indicators that inadequate time and resources have been expended in the planning and execution of the project, and that people with disabilities have not been involved in all stages. There is a consistent theme that people with disabilities wanted to have their voices heard and their contributions to make a tangible difference, but when the necessary supports to enable their meaningful participation are not put in place, their personal stories are disregarded and their involvement tokenistic.

Beyond Representation

Questions about representation, who participates and what is expected of them, are unresolved and challenging issues inherent in Australian policies of recognising the expertise of people with lived experiences of disability. While a growing number of people with disabilities are participating in advisory and governance structures, this is still only a relatively small group. A small minority are people with intellectual disabilities, who are usually people with mild rather than severe or profound intellectual disabilities. A central question then is whether people with disabilities are expected to represent and speak primarily from their own lived experiences. If this is the case, then who represents the perspectives of those with more severe disabilities and complex needs than their own? Or are people with disabilities expected to represent the lived experiences of all people with disabilities? If this is the case, then how well are they able to do this? There are no easy answers to these questions, but they are worth considering. They draw attention to the types of voices and perspectives that are not being heard and the other strategies might be necessary to include these in order to complement those of people confident to talk about their own experiences. For governing boards, directors without disability are usually not expected to be representatives, and nor should directors with disabilities. Further, inclusion of board directors with disabilities is not a substitute for other efforts to understand the varied perspectives of people with disabilities.

Blending Different Types of Expertise

One of the core and most exciting purposes of co-design projects, advisory and governance bodies is to bring together people with different knowledge, skills and experiences and distil their individual contributions to solve problem and develop innovative ideas. Tying together different types of expertise and knowledge—the lived experiences of people with disabilities, subject matter experts and evidence from rigorous research that might have attempted to represent the experiences or quality of life of large cohorts of people—is a major challenge. To be done well it requires time and skilled curation and analysis. Such tasks require value judgements about the relative importance of different sources and perspectives, which may not be explicit. While boards are accountable to regulators and constituents, it may not always be clear to whom or how co-design projects and advisory bodies are accountable about the processes of distilling differing knowledge and making recommendations about new policy or service recommendations. Questions about accountability are important and may become increasingly important in the future as more people are involved in participatory structures.

Conclusions

Recognition of the value and importance of including people with disabilities in everything about them represents a major step forward in the recognition of their rights and a shift in the way that the broader community perceives their social identity. Having well-planned, effective support in place to facilitate their engagement in really ‘working together’ to embed the ‘nothing about us without us’ imperative into practice is crucial. Including elements such as ‘co-design’ into projects without fully understanding or being prepared to provide the level of appropriate support to make the experience meaningful and productive for all participants risks inclusive ambitions remaining at the level of rhetoric. It is not adequate to claim a project, advisory body or governance board co-designed or inclusive; it must be planned, designed and executed with people with disabilities. There are added challenges to including people with intellectual disabilities who require more time, different ways of working and more individualised support to participate meaningfully than many other people with disabilities. Providing all these adjustments takes planning, resources and time, but it is vital to realising ambitious policy and improving the quality of policy and services and in turn the quality of life of all people with disabilities.

Take-Home Messages

  • Disability policy highlights the importance of working with people with disabilities in policy making, projects and research, and acknowledges their lived experience expertise.

  • People with disabilities can derive tremendous personal benefits from participation including self-confidence, feelings of self-worth and purpose, and skills for paid and voluntary work. Their participation can also change community attitudes about people with disabilities.

  • Skilled support is essential to ensuring participation is not tokenistic and is a meaningful experience for individuals. Putting the right supports in place, particularly for those with intellectual disabilities and more severe and complex disabilities, requires time, planning, resources and a commitment to supported decision making and engagement in all aspects of the work planned.

  • There are numerous organisations which have developed resources to support and train people with and without disabilities to work effectively together and these are a useful starting point for supporters to find out about strategies and tools for providing support which enables people to engage meaningfully.