Mr. Joe McGrath:

I thank the Cathaoirleach very much for the invitation to speak today. I am the vice chair of the National Platform of Self Advocates. We are Ireland’s first independent disabled person organisation, DPO, run for and by people with an intellectual disability. We have more than 350 members all over Ireland advocating for their rights in forums such as this.

When we talk about participation in public and political life we do not just mean voting and being elected. We mean all activities and decision making that affect the public. The UN Convention on the Rights of Persons with Disabilities, UNCRPD, is very clear that states have to guarantee the rights of disabled people as voters, candidates and officeholders at all levels of government. Participation means more than coming along one day to a meeting and telling our stories. Participation for us means we should be involved in running events, chairing consultations, writing up reports and deciding what the solutions are.

People with an intellectual disability are not involved at every level of government. We are not employed as experts in the Civil Service. We are not elected to public office. We are not even represented on all the departmental consultative committees. The State does not seem to understand that many of us are not readers, do not write or do not have access to technology. We are excluded from participation when we are not given the time or the supports we need to communicate. We feel we are only allowed to participate in story-telling and not in decision-making.

The UNCRPD says that states have to encourage the participation of disabled people through their own DPOs. This includes funding. When we are fully funded we can bring the voices of people with an intellectual disability into different forums. We have taken part in personalised budgets and Make Work Pay. We deliver training on the Assisted Decision-Making (Capacity) Act. We are empowered advocates but without funding we still have very little power. When funding stops, all our time goes towards finding money and our advocacy work stops.

If we want to be heard we cannot join bigger disability groups. We need to keep our own independent voice. We have lots of evidence that when we merge with other groups our voices are silenced. Other disabled people do not always understand the extra barriers we face and they do not always advocate for accessibility or include us in how decisions are made. We want the State to give funding for a wide range of DPOs so that unique groups can have their voices heard. If there is competition for funding for advocacy activities, prioritise DPOs. This may mean taking money away from service organisations and giving it to DPOs instead.

The State needs to communicate with people with intellectual disabilities in accessible ways or we cannot participate. This means providing information in accessible formats such as easy-to-read English and videos, and giving us time to respond to information. Calls for submissions should be published long in advance of deadlines. Many of us rely on supporters to give us information and to assist us in telling our stories. This takes much more time than is usual.

The best way to engage with the National Platform is to invite its members to a meeting of only people with intellectual disabilities. This gives us space to talk about issues that affect us. We find that when we are mixed with other groups, people do not give us a chance to speak.

We want the State to include us in policymaking from setting the agenda to implementation and evaluation; make sure the public process is accessible in how it is organised, scheduled and run, and include people with intellectual disabilities in the design and chairing of events; guarantee that our unique voice will be heard and heeded; and require that all official information is provided in accessible formats from every Department, not just information about disability issues. People with intellectual disabilities have the right to be included in every part of life. We want the State to train public servants on the Convention on the Rights of Persons with Disabilities, CRPD, and the public sector duty; and employ people with intellectual disabilities in the public service as advisers and access champions.