Maire Devine (Sinn Fein) | Oireachtas source

Yesterday, I tabled a Commencement matter to which the Minister of State at the Department of Health, Deputy Jim Daly, responded. My Commencement matter related to a motion passed in this House last February. The motion was unopposed. It stated clearly that a non-HSE parent representative should be on the HSE primary care national steering group for children with complex medical needs. Unfortunately, that view seems to have been overturned, over-ruled, ignored and disrespected by, I presume, not just the HSE but by the Minister for Health. The HSE has progressed with the focus group, which the parents do not want. Instead, the parents want a direct professional voice to be part of the group.

This morning I spoke to representatives of the Disability Federation of Ireland. They strongly believe that we have a case. I will find a way to ensure that the preferred representation occurs and that a parent is heard on the steering group. The federation believes the current situation goes against the recently ratified UN Convention on the Rights of Persons with Disabilities, in particular Article 4 that allows for equality of voice, inclusion and decision-making.I also will pursue the issue regarding the Irish Human Rights and Equality Commission. Members of this House need to be aware of and not allow something that was passed unopposed in this House to be ignored and disrespected. Democracy itself has no meaning when it comes to the HSE, and I ask the Leader to request that the Minister for Health, Deputy Harris, come to the House to discuss this absolutely heartbreaking decision that has been made, underhandedly and not too obviously.