Rose Conway-Walsh: Calls out 17-year failure on Epson Act
Rose Conway-Walsh spoke on 20 April 2021 about the long-running failure to implement the Epson Act and the wider shortcomings in services for autistic people and others with disabilities. She described an "enormous implementation deficit", questioned departmental accountability and pressed for legislative review, a human rights roadmap and mandatory collaboration across departments.
Implementation deficit
Rose Conway-Walsh warned that a child born when the Epson report or Act came into force would now be 17, calling that outcome "an absolute disgrace" and asking whether the same failures will persist another 17 years. She highlighted an implementation deficit and urged examination of why the legislation has not been put into practice.
Departmental accountability and interface
She focused on the interface between departments, asking who is accountable and who will ensure departments cooperate to put the child and family at the centre. The transcript includes examples from Dr. Muldoon of Tusla and the HSE finding ways to share funding in individual cases such as Jack and Molly, and notes that CEOs drove that cross-departmental cooperation.
Funding, measurement and services
The deputy referenced recent allocations, noting the cited
2 billion and 1,423 new staff for educational needs, but questioned how outcomes are being measured and whether money is reaching the right place. She warned against a persistent "industry" forming around services without involving the people directly impacted.
Families' rights, files and culture
She raised concerns about families and individuals being in fear of losing what they have and asked about the right of autistic people to access their files without redaction. Dr. Muldoon pointed to the Data Protection Commission as relevant, but said redaction issues and a lack of cooperative culture - highlighted by a whistleblower - undermine confidence.
Calls for legislation and cultural change
Rose Conway-Walsh echoed calls for a legislative review and the implementation of a human rights roadmap, stressing that legislation must be accompanied by cultural change. The transcript records discussion of possible legislation to mandate collaboration and cooperation across departments as a means to deliver joined-up services for children and families.
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Thank you, thank you Cathaoirleach and thank you to all the contributors. I am a long-time admirer of all of the work done with, as I am, I suppose in particular I have a special interest in Autism, Down Syndrome Ireland, Inclusion Ireland and indeed all the great work that has been done by yourself Niall. So a child who was born when the Epson report was, came into force or Act came into force would be 17 now. God, that is an absolute disgrace. I mean that really speaks for itself and it speaks that we have an enormous problem. So are we going to be 17 years on from today and still dealing with the same situation? And that is what faces us as a committee here today before us. And so it's very clear that there's an implementation deficit there and an enormous deficit. And I get what the ask is, Niall, in terms of that you need us to conduct a legislative review, Adam, it was you that actually spoke about that, and to implement a human rights roadmap. And also that the fact that the legislation must go hand in hand with the cultural change. That is not a big ask. And that shouldn't be something that's kind of added on to this. So I have a number of questions I want to ask first and maybe from all of you. Why do you think that the Epson Act has not been implemented? And why did it take 12 years for an autistic person to be on the National Council for Special Education? And we have to examine the why in all of these things to see where the blocks and barriers are. And I want to ask you around the interface between departments, because that is where the biggest issues that I come across. So who is accountable and who has overall responsibility? So who is going to make sure that the departments come together and the different areas of responsibility to come together to put the child and the family at the centre of what is being done? Now, we're told, obviously, we all welcome this 200 billion, or there's 2 billion allocated. There's 1,423 new staff for educational needs this year. And my fear is that, you know, this is looked at, government after government, almost throwing money. How are we measuring the outcomes there? How are we measuring the outcomes there? How are we making sure that the money goes to the right place? You know, a lot of these issues, there's a whole industry set up around them without ever involving the people who are directly impacted. So that is, you know, we talk about 5 million, I think, in recent years, but that is the tiniest tip of the iceberg. Because for most families, first, they can't do that because they're in fear. They're in fear. And we have to remember that. They're in fear. Many families and many people who are directly impacted are in fear of losing what they already have. And to most families, they can't take on the might of the state financially as well. I want to ask you a specific question, Niall, and that is, families are individuals who want to find out information that's held on them by various departments, whether there's a legal case or there's not. Does, say, an autistic person have a right to get their file or their file without being redacted? I have several other questions, but I want to hear from yourselves. Thanks. Dr. Muldoon, if you come in on that? Who did you ask? You, Dr. Muldoon, yourself. Yeah, thank you. Okay, in regards to the files, I suppose I wouldn't be 100% sure on that, on that deputy. I mean, that's the Data Protection Commission, but I mean, from, again, if you're putting the child at the centre of your thinking, you would expect that they should be able to get a file available for themselves that isn't redacted without interfering with the rights of other people. But that's where the caveat comes in, redaction happens. But certainly, what we've seen so far, you know, we're looking at prime time, you talked earlier about a culture. If we're going to create confidence and security for the families, then the culture that we've seen so far and was highlighted by the whistleblower was far from what we want in regards to cooperation and collaboration. I think it's to answer your other question about the interface between departments and overall responsibility. I think we had a great success in an investigation we did in relation to Jack, a little boy with severe disabilities, who was a brain injury and kept in a hospital for two and a half years instead of being brought out to his own home. But Tusla and HSE argued over it. We now are in a situation where they've found a way to work together and to share the funding for children like Jack. They've done the same with another case called Molly, where they're sharing a budget. And that's the first time I've seen it happening where there's a legislative underpinning within the budget and the votes to allow a certain cohort of children that are cared for by two different departments to be funded by the two different departments together. And they've got a process in place for that. And that's driven by the CEOs of both the HSE and Tusla to make it happen. And the government departments have fixed it. We need to get to that. We need to get to that situation where the Department of Health can share some of their money with the Department of Education. They recognise, and again, it's forward planning. You know, children, especially children with severe and profound disabilities, you know who they are from the day they're born. They don't, you know, unless it's a brain injury. And in the brain injury, again, you can predict very quickly what they're going to need in the future. And it's those interactions. And we had a meeting last week with the Department of Children and they're talking about legislating for mandatory collaboration and cooperation across departments. You know, it's terrible we'll have to do that. But I think if that's the way forward, let's do that. Let's mandate it. The departments have to cooperate and collaborate on behalf of the children and the rights of the children. And the child then again becomes the centre of the decision making. And it takes away those barriers where we can share information, we can share budgets, we can predict what's needed. And nobody has to fight over what's required. You know, again, back to what Adam said at the start, constant battles by families. We don't need to have them if you predict so much as much as you can. We don't need to have them until now. So, thank you very much, Dr.
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