Ms Aoife O'Toole:

I thank members for the invitation. It is very encouraging to see the work of this committee, which demonstrates a new approach for governments throughout the world in monitoring the implementation of the UNCRPD.

I have worked in disability services in Ireland and Australia for more than 30 years. The question I asked when I began, and still ask now, is why people's lives are so different just because they have a disability. The UNCRPD exists because people with a disability are still experiencing inequality and discrimination. Today, in 2021, there is still a prevailing narrative of people with a disability as objects of pity, objects of charity and as a burden to their families and the State. The Taoiseach stated in the Dáil in October 2020 that the system needs to change and reform. The HSE has also committed to the reform of disability services in its 2021-2024 corporate plan. From my perspective, reform is not enough; we need a transformation of the system and within society.

Over the past two years, I have been researching systems change, systems thinking, social innovation and the use of technology to drive transformation. I was really curious about the approaches other sectors use to transform successfully and achieve value for all. This was a fascinating journey and it led me to ask what if we could make more use of the tools and technologies that work in other industries to transform the disability sector and, in doing so, improve the lives of people.

I will share three matters that can help in this transformation. The first is a change of mindset. All lives matter. Just like the Black Lives Matter movement, which addresses the unconscious bias against and inequality experienced by black people, we need a movement to do the same in Irish society in the context of disability. It is not a person's disability that limits his or her life but rather the cumulative impact of how society sees, treats, devalues and discriminates against people.

Transformation begins when we change the narrative and see people as whole, just as they are. The reform of disability services in Australia, which Mr. Broadhead mentioned, is very instructive for us. It was propelled by the actions of people with a disability and their families in the “Every Australian Counts” campaign. This campaign fought for the introduction of the national disability insurance scheme, NDIS, and won. It was a call to action that gave all Australians a reason to care about disability through the sharing of stories on the impact of living with a disability. In line with Articles 3, 4 and 5 of the UNCRPD, I urge the committee to use its influence to invest in a social movement campaign that shifts mindsets and makes equality the new normal and not the exception.

Second, we cannot support people to lead a good life if they are not part of creating their own solutions. Article 4.3 of the UNCRPD is such a wonderful asset to guide us in the reform process. Partnering with people with a disability and their families will drive innovative solutions and shared value. The demonstration project on personalised budgets, which Ms Loughlin mentioned, is one of the ways the system can learn how to do this. People with a disability and their families, in partnership with services and community, are designing the supports that work best for them. They are doing this with the support of small agencies such as PossibilitiesPlus and the AT Network. The demonstration project and the research into the resource allocation tools place Ireland in a position to have the potential to transform, similar to what was outlined in regard to the NDIS. Individualised funding is already happening in Ireland, and there are wonderful, compelling examples of co-creation, collaboration and good lives being realised by individuals and their families throughout the country. I suggest we invest more in these opportunities. They remain very fragile.

What is also exciting and may not be widely known is that a new ecosystem is emerging in Ireland, where social enterprises, networks, entrepreneurs, coaches, mentors and new alliances have formed. These entities are partnering with people with a disability and their families and achieving the kinds of change, support and outcomes people want. These initiatives include the Inclusive Living Network; Positive Pathways and the In Conversation series; Blossom Ireland; In Charge; Humankind Coaching; Future Solutions; and Codie: Communities Driving Ireland, to name a few. Like many start-ups, they have the potential to scale, solve problems and open the marketplace, but only if they are invested in.

The third area concerns how digitisation can positively support the transformation of disability services. The pandemic has altered life as we know it and digitisation is transforming so many aspects of our lives, from how we shop to how we connect and work. A deliberately different and innovative approach to transformation is needed, and there are many ways digitisation can make people's lives better. For example, it is helping many companies throughout the world to be more efficient and effective by creating digital end-to-end processes and automated workflows, such as rosters, timesheets, payroll, purchases and payments. Another example is learning platforms, where people with a disability and their families and staff can build their confidence and capacity in new approaches.

A third example of digitalisation are online platforms that can help with the challenges in recruiting and retaining staff, which is highly problematic at the moment. These platforms enable people with a disability and support workers to connect based on needs, interests and location, and offer choice of who to work with, which is a win-win for all. The platforms also have the potential to connect people with other supports, such as community co-ordinators, mentors and natural supports in the community. They work successfully in other countries and are starting to emerge in Ireland.

I urge the committee to consider three things. First, investing in a social movement campaign that shifts mindsets and can bring about the societal change needed to achieve equality and non-discrimination. Second, investing in how we grow and scale approaches in designing and delivering services in partnership with people and their families. Third, investing in the digital transformation of disability services in a way that keeps relationships at the heart of what we do.

I believe we are on the cusp of this transformation, especially with the transfer of disability out of the Department of Health, the ratification of the UNCRPD and the knowledge and expertise that exists in Ireland when we harness the benefits of partnering with people and their families. If we make the right investments now, we have a pretty good chance of achieving equality. Can members imagine a time when people with a disability can be where they want to be in their day, their life and their community? I thank the committee for the opportunity to address it.