If we take the area of women in the Constitution, which we are doing, if we can have them in that dialogue it can bring the work a bit further too and have it in our Oireachtas reports. We can see how we can work that.
On the ESRI, we have looked a lot at goods for businesses but if it looked at the impact of not having the dual market access for services to the EU and the impact it would have to the all-island economy, that would be excellent.
]]>By the way, the research being done is excellent. I want to see this continuing and exploring different aspects, similar to what has been explored already but moving beyond the current stage because, at the end of the day, we have to present the hard evidence and doing so is a way of taking the emotion out of things. We understand the situation around the congruence of data, etc., which we talk about continuously. In other forums, we are trying to bring about better congruence between the Northern Ireland Statistics and Research Agency, NISRA, and the CSO, etc.
Turning to the dialogues, which are also good and produce really rich information, I ask Ms Deane to talk me through the steps in regard to where this information ends up. There are videos and reports. What ultimately happens with the reports? Where do they go?
]]>Mention was also made of the local authorities, and I absolutely agree about the potential in this regard. Is that local authority application process closed now? Ms Deane mentioned that 25 proposals have been submitted. Does that shut off entries from any other local authorities that might wish to apply to the scheme?
]]>It was stated the shared island unit is mainly concerned with capital projects. We are doing work now on women and the Constitution to try to ensure nobody is left behind in respect of having their say, regardless of what their constitutional preference is, regarding how we shape things in future. There seems to be a real appetite among women's groups and hard to reach groups in respect of wanting to have a say in how we shape the future of the island. Is that something the shared island unit can facilitate or assist with in relation to the practicalities of bringing these voices to the fore as a collective?
]]>The guide to rare diseases in Ireland states that FVS is:
a range of devastating birth defects that can occur from the side effects of taking an anti-epilepsy or other drugs which contain valproic acid during pregnancy. Despite studies dating back to the 1980s ... governments ... were slow to act on overwhelming evidence of the side effects ... Progress on addressing this issue is thanks to the advocacy of [families led by] one Irish parent, Karen Keeley. Thanks to Karen and the patient advocacy group she founded, the Organisation for Anticonvulsant Syndrome, OACS, Ireland, ... there are now considerably heightened warnings about the dangers.
The long-awaited promised inquiry has been far too slow. I understand that a chair for this inquiry is now sought. It is imperative that there are no further delays and that the inquiry is comprehensive, with the families impacted being put front and centre. These families, some of whom have a number of children and adults with that condition, have suffered enough. These families deserve the truth regarding what people knew, when they knew it, and why, when there was mounting evidence, no one shouted “Stop”. These families have been harmed. They have had to endure a rare disease that was totally preventable.
I want to thank the Minister for at least agreeing to an inquiry. I know he understands how important it is that the inquiry gets up and running as quickly as possible, and that we find a suitable chair who will get to the truth and the bottom of this matter and who will be able to address the situation.
]]>On privatisation, I note where the Minister talks about private supports. People cannot afford them, and that is the problem. If you are referred on to private services, that is okay if you have the money but if you do not, you are left without it. A measure that the Government could do immediately would be to relax the carer's allowance means test, and to increase disability, invalidity and illness benefit, the carer's allowance and the annual carer's support grant. The level of scrutiny that carers are under in seeking the very most basic support is absolutely unacceptable. On the one hand, they are watching golden handshakes and huge exit payments being given to people and on the other hand, you have carers who are scrutinised within an inch of their lives in the most appalling ways. The microscopic assessment that is done of carers goes on and on for months. Nobody is saying to give something to somebody who is not eligible but being asked questions like, "Does your son still have autism?", or "Do they still have a lifelong disability?" is just crazy when they know the situation. I ask the Minister and Minister of State to please look at the carer's allowance, and ensure people get it in a timely way.
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