People With Intellectual Disabilities and Leadership

"If your actions inspire others to dream more, learn more, do more and become more, you are a leader."-John Quincy Adams

Ensuring the NDIS, mainstream services and the broader community take account of the lived experiences and issues unique to people with intellectual disabilities is a continuing challenge. The NSW Council for Intellectual Disability (CID), has led advocacy in these arenas for many years. Its advocacy service is under threat of closure due to a decision of the NSW Government to stop funding advocacy services.

CID is led by people with intellectual disabilities. It is held in high regard and perceived as a credible, strategic, inclusive, agenda-setting organisation. People from all levels of government and service provision are prepared to listen to CID.

CID’s central purpose is building the capacity of individuals with intellectual disabilities to find their own voices and undertake advocacy at the system level. Its edge results from being deeply grounded in the experience of people with intellectual disabilities and the planning and execution of its work by leaders with intellectual disabilities, family members and professionals working together.

The inclusion of people with intellectual disabilities in CID is both exemplary and exceptional at all levels of the organisation, from leadership and governance, campaign work, to public and professional education and consultancy. Support for inclusion is ongoing and not left to chance, whatever a person’s role or experience.

Including the perspectives of people with intellectual disabilities in policy reforms and the redesign of service systems is a fundamental premise of most disability policies, the purpose of which, is to ensure their lived experiences and unique issues are taken into account.

Characterising CID is difficult. A very strong part of its purpose is building the capacity of individuals with intellectual disabilities to find their own voices and speak out. Supporting their participation in the organisation’s governance and advocacy work are core staff tasks, as one CID staff member said:

CID is the vehicle by which people with intellectual disability have their own voice in public debate and civil society, and that has involved loads of support to people to develop their skills, and that’s an ongoing process. [Staff member 1]

Yet CID does not fit the traditional mould of self-advocacy as it has been understood in Australia. It has a wider brief and the work of CID staff extends beyond the role of support workers. CID’s purpose sits somewhere between empowering leadership by people with intellectual disability and professional advocacy, and its edge is created by the alliance between leaders with intellectual disabilities, ordinary members and professional staff.

Together they work strategically, taking a much stronger systemic advocacy focus than typical self-advocacy groups. They do this by collecting, comparing and picking the pith out of individuals’ stories and acting on the wider policy implications these throw up. A board member with intellectual disability captured the unique essence of this organisation as one that not only supported people with intellectual disability to have a voice, but also made others hear it.

One staff member talked about a recent meeting with the NSW shadow Minister for Health he had attended with one of the leaders. Another spoke of supporting a member to be on an advisory committee about accessibility on NSW train services. Academics gave further examples of CID members employed as part of research projects, providing one-off consultations to inform their work or talking with students about inclusive research.

CID does not compromise on the necessity for skilled support and the time it takes to enable the participation of people with intellectual disabilities, either for internal governance and leadership work or external advocacy or education work. Sitting fees for meetings, for example, generally do not reflect the level of preparatory work required by a person with intellectual disability and their supporters, but in some organisations are the only avenue for payment of external experts. One academic talked about the impetus CID had given her to change university policies to recognise the real costs of participation.

People with intellectual disabilities are like no other group in being able to make choices, understand what the potential is for systemic change that would assist them. And nor are they as individuals really, without real systemic advocacy support, able to see the ramifications of things that are coming down the track [ Comment from University Professor ].

...some of the really complex issues that sometimes do get glossed over in this rush to have everybody under the disability banner. So, we understand that disability as a social experience is one of discrimination...But in terms of particularly things like access and inclusion the issues for people with intellectual disability are very different...They need communication support and cognitive support. They don’t need ramps, they don’t need lifts... those ways of thinking about what access and support are about have been skewed, in my view, towards disability as a bigger category. And whilst we've made pretty good gains now in physical access and sensory access ...we've made a lot less gains in cognitive access and cognitive support and what that looks like for people. [Comment from University Professor ]

Two outstanding features of CID, in addition to its inclusivity, are its solution-focused approach and its commitment to working collaboratively. These features make CID not only an easy organisation with which to work, but one that is well informed and brings together key allies and stakeholders around particular issues.

Tangible achievements of CID range from leading advocacy associated with the responsiveness of the NDIS to people with intellectual disability, changing community expectations about the participation of people with intellectual disabilities in civil society and building longer term capacity for this. All of which stem from CID’s role as central to driving a ‘social change agenda in intellectual disability in New South Wales...[and] more nationally for quite some time.

CID acts as role model, exemplifying to other organisations that participation by people with intellectual disability is both possible and how it can be done. As already discussed, inclusion is embedded throughout the organisation, its internal governance and advocacy work. This in itself is rare among organisations that put issues for people intellectual disability at the forefront of their work. As such, it plays an important educative function for similar organisations. It is also important for government and other organisations where expectations of participation by people with intellectual disability are growing often in the absence of guidance about how this might be achieved. Informants pointed both to the role of CID in changing expectations and the influence of their exemplary practice.

By the very way that it works, as well as their specific leadership programs, CID creates a legacy of increased potential for inclusion by swelling the numbers of people with intellectual disabilities with experience and confidence as advisers and educators to government, service providers and academics. Attention was drawn for example, to the current membership of the Disability Council, the NSW Government’s disability advisory committee. The Council’s three members with intellectual disabilities had all been part of

CID training initiatives and two had served as CID committee members in the past. Others suggested that without CID, there would be no place that people could go to gain the skills or confidence to sit on advisory or reference committees, or participate in education such as that provided to members of the Guardianship Division.

They currently have produced dozens of people with intellectual disability who are distributed around New South Wales as leaders and who have the confidence to speak, confidence to say what they think – you know that great saying ‘truth to power’. And have the confidence to do that to government, to local government, to NGOs, if CID was not there, they would not be there doing that... The New South Wales Disability Council would not have anyone with intellectual disability on it, were it not for CID. [Comment from University Professor]

Important too is the impact that being included has on the lives of people with intellectual disabilities involved in CID. But just on a day-to-day basis, the impact on people with intellectual disabilities that are involved very much in the running of the organisation are the public face of the organisation, so the impact on them personally I think has been quite amazing, looking at people who really have a really valued role. [Senior service provider]