Dr. Robert Sinnott:

I am joined by my colleague, Mena Fitzpatrick, and also by Siobhan Roche from VVI as well, who is in the Gallery.

I will get through as much as possible in five minutes, knowing I still cannot read the notes in front of me. The last two times I have been here, I have mentioned that we are not resourced enough for me to have the technology to perform at meetings in an equal way, but here we go anyway.

We use the words "disabled persons representative organisation" to also mean "disabled persons organisation" for practical reasons. DPO can be confused with data protection officer, designated public official, etc. Also it is in keeping with Article 4.3 of the UNCRPD, which refers to consulting disabled people "through their representative organisations". The legal opinion we commissioned in 2021 showed the only representative organisations, as Ms Browne said, are DPROs. There is nobody else. The UN committee is happy with different uses of language: organisation of people with disabilities, medical model sort of language, DPOs in Britain and other things, but we work with DPRO, as do our colleagues in Physical Impairment Ireland.

Collective representation is like collective bargaining in terms of trade unions. Collective representation is vital to continuity and consistency. It is a cross-cutting cornerstone of immediate effect in the CRPD. We know it is of immediate effect from general comment No. 1, paragraph 30. It is not of progressive realisation, as the State has been wrongly claiming all this time, which applies to social, economic and cultural issues but not to our political rights. It is often forgotten that DPROs are strongly mentioned in Article 29.b.ii., which says the State effectively has to create conditions whereby it is worth people joining DPROs. There has to be something in it for them. That will not happen as long as we are being marginalised and ignored.

There is, unfortunately, a muddying of the waters in terms of self-advocacy by non-DPROs in their three-year strategies, etc., setting up advocacy networks and self-advocacy groups and all the rest of it. General comment No. 7 of the UN committee speaks of self-advocacy as primarily relating to those with intellectual disabilities and similar cognitive impairments, children's organisations, etc. Self-advocacy is a significant role. Those organisations of self-advocacy are DPROs in their own right. The National Platform of Self-Advocates is a 12C organisation but we do not appear to have any 12D organisation, which is for people who are non-verbal, etc., and need stronger parental or family member support. We need a 12D. That is what the CRPD means by self-advocacy.

Self-advocacy in terms of individual rights and reasonable accommodation is a different matter. General comment No. 6 refers to Article 5, concerning discrimination. People are the best experts at representing themselves and their own reasonable accommodation but in macro policy it is chaos if there is a free-for-all in terms of consultation. It is disempowering because there is no longer an iterative or discursive engagement. It ends up that he who shouts loudest gets the most. Disability and accessibility is the most appropriate realm for "he who shouts loudest gets the most". We need to move to a rights-based approach.

Since the referendums, there has been a tilt at NGOs but there is a legally binding roadmap in terms of DPROs in general comment No. 7. We need registration, as has been said, in line with general comment No. 7. We need legislation in order to disability-proof everything. For instance, the Charities (Amendment) Bill is going through. There has been consultation with The Wheel and other eminent organisations but none on the CRPD. That will mean human rights will have to go under charity, which is against the CRPD model, which is the social model of disability. That is one example. The Planning and Development Bill is another.

We also need to be protected in legislation against non-DPROs because traditionally they have claimed to be the representative organisations. There also needs to be awareness raising on that legacy.

In the meantime, the Department of Children, Equality, Disability, Integration and Youth needs to issue a memorandum. The Department will not even take phone calls and says it is not public facing. This committee has presided over this. Eight of its 14 members are members of the governing parties which have presided over that. There needs to be some responsibility for that and for the funding of the Disability Participation and Consultation Network, DPCN, to the tune of €700,000 in the last three years. There is no accountability for the fact that, according to the NDA evaluation, the network was not founded along the CRPD lines.

The memo by the Department should inform all 600 public bodies of their obligations to prioritise the views and opinions of DPROs in all disability proofing and also to stop any subversion through subsidy of research and all aspects of disability service providers. They are doing the consultative work that we are doing. That is our role to do.

Human rights means prioritising the perspectives of those with the least resources and supports. If DPROs are being ignored, it will be hard to attract members to them, let alone to have sustained involvement and engagement. Things are as bad as they could be after six years. Our experience has been that the State still has not woken up. There are some odd examples, but we have to firefight and explain all over again what a DPRO is. That is the State's responsibility under Article 8 of the CRPD. That has to change. This committee probably does not have long to go before the next election. We want a massive change from what has one before.

Ms Fitzpatrick would like to say a few words.