Ms Jacqui Browne:

I am chair of the DPO network, which comprises five organisations. I will continue on with the remaining items of the agenda that the joint committee is covering today.

First, I will talk about meaningful consultation. In order to achieve meaningful equality, disabled people and our representative organisations must be consulted on all decisions that impact our lives and not just on legislation that specifically focuses on disability. We live a full life and we do not only focus on disability issues.

We believe that consultation processes at all levels of Government and decision-making, including local government, must be accessible and underpinned by the principles of universal design. Accessibility planning must also consider reasonable timelines to allow DPOs to participate fully. We need that time.

There needs to be a robust and continuous forum for engagement with DPOs, both nationally and locally, in order to identify key areas of expertise and input. One weakness that we have found is that too often in society the ideas around what we might be consulted about are decided by others who are mostly non-disabled people. We do not even get a chance to set the agenda around the issues that we want to be consulted about. We need ongoing dialogue where we can raise areas of priority, identify our own areas of expertise and be involved in setting the agenda as much as replying to the agenda. Consultation should result in meaningful engagement. That means that DPOs input must be genuinely taken on board, adopted wherever possible and that clear explanations are provided wherever DPO recommendations cannot be adopted. We also need to ensure there is adequate representation of additionally marginalised groups who are often excluded. For example, people of gender, different backgrounds, ethnic minorities, children, and people with very high level and profound needs in terms of support. We must bring everyone with us at the same time.

The Assisted Decision-Making (Capacity) Act, and the Assisted Decision-Making (Capacity) (Amendment) Bill, are probably the most significant pieces of legislation affecting disabled people's fundamental rights and freedoms currently before the Oireachtas. We are concerned that the joint committee tasked with ensuring Ireland's implementation of the convention is not involved in its review in order to ensure its compliance with the principles and obligations of the convention. We are also very concerned at the implications of the resistance shown to involving DPOs in consultation on the amendment Bill based on the erroneous belief that a focus group consultation, which took place way back in 2013 and before the convention was even ratified, suffices. That is not the case. We have similar concerns regarding adult safeguarding and other future legislation failing to involve DPO expertise from the earliest stages in terms of design and implementation.

In terms of enabling inclusion and participation, it is essential that DPOs are adequately funded and resourced to fulfil our duties. This must include capacity building, funding of accessibility measures, governance support, training development, and access to information needed to influence policy and monitor the implementation of the convention. Attention must also be paid to ensuring that disabled people are not expected to work for free on a voluntary basis and that we do not face negative consequences for engaging in any DPO-related work due to rigid means-testing restrictions on disability-related payments and other similar type supports.

Levels of resourcing and access requirements for DPOs must also be considered when developing frameworks to ensure meaningful consultation. Some DPOs, indeed, members of our DPO network, even on the national level, are not in receipt of any funding whatsoever and rely solely on the volunteer work of disabled people who often have other day jobs. This means we need longer consultation timelines and it is obvious that we do not operate on an equal basis to others around disability issues. For example, should Irish Sign Language interpreters be required for internal consultation most DPOs will have to book them weeks in advance. Therefore, if we are to be truly inclusive we cannot simply decide to have a meeting tonight at 8 o'clock unless we have pre-booked sign language interpreters. It is important that these factors and examples like this are considered well in advance to ensure equal participation for everyone. Similarly, people with intellectual and-or learning disabilities must also be given adequate time, resources and necessary supports to fully understand processes and be enabled to contribute in a meaningful way that respects their needs.

Consultation with DPOs, while useful, is not sufficient for the full realisation of our rights and, indeed, those contained in the UN convention. Disabled people need to have decision-making power, oversight and monitoring of mechanisms and systems designed to implement the convention. This requires continuous engagement with DPOs and developing working practices that are inherently accessible and universally designed from the start.

DPOs and disabled people need to be resourced on a continual basis to participate in such mechanisms. It cannot just be one-off projects and pilots.

The final agenda item the committee asked us to address was around the cultural shift required through awareness-raising and local mechanisms. The network has two points to make here. Awareness-raising campaigns, while very useful, have limited value and so we need to be very careful in how design and develop them and what the purpose of them is. They must be conducted in a way that is accessible, respectful and, most of all, not tokenistic to disabled people. Awareness-raising campaigns have their place but are most effective when they are tied to a particular issue or issues that can be acted upon and result in meaningful change and where the goals of such campaigns are clear, reasonable and achievable for disabled people. Historically, we often had non-disabled people going around towns to check out how accessible they were. That is tokenistic. That is not accessibility auditing. We need to really think through this and the only way you can do so is by working with and talking with disabled people, and involving them in the development of such awareness-raising. Much emphasis is sometimes placed on delivering training and equality awareness around disability issues on the basis it will solve the problem. That is not necessarily so. Any disability awareness training delivered to public and civil servants must be developed in partnership with DPOs and delivered by them. Such awareness-raising is of little use if it continues to perpetuate harmful stereotypes or misinformation.

I have a couple of concluding remarks. I believe members of this committee know we have an opportunity for Ireland to fully realise the implementation of the UNCRPD, including the ratification of the optional protocol. How can this be achieved? It can be achieved by taking action and recognising that now is the time. Now is the time to bring our policies in line with our fellow European countries and adopt internationally-recognised standards. Now is the time to resource and build the capacity of DPOs to support Government and service providers to achieve equality and access for all. Now is the time to finally hear and prioritise the collective voice of disabled people and bring that voice and the value of it to the relevant local, national and international policy spaces.