Kathleen Funchion demands clarity on adult day services and masks
Kathleen Funchion questioned witnesses about the reopening of adult day services, representation for people with disabilities at NPHET, and guidance on face masks. She argued families and people with disabilities are receiving inadequate information and raised concerns about long delays, missing supports and therapy regression.
Adult day services reopening
The witnesses said HSE guidance on adult day services does not include dates or clear service levels and only refers to a reduced level of service. Anecdotal reports shared with the committee included services aiming to ramp up after the August holidays, some citing September 7th, while others have told families to expect December or January resumption dates.
NPHET and disability representation
Funchion asked whether a specific person had been appointed to link people with disabilities to NPHET and said the category appeared forgotten in parts of the response. Witnesses noted that a vulnerable subcommittee and community COVID responses reported into NPHET and that unresolved issues could be escalated, but she stressed that the outcomes to date have left many families feeling abandoned and highlighted deaths in residential services as a stark indicator of failure.
Mask guidance and cocooning
She raised ongoing problems with face-mask guidance for deaf and hard-of-hearing people and for those with autism or sensory issues. Funchion warned that unclear rules and public messaging risk isolating people who cannot wear masks - effectively telling them to stay inside - and asked for explicit exemptions and clearer communication.
Service gaps and consequences
Funchion reported widespread complaints that PA hours and home help are not being delivered, waiting lists remain severe, and many children have regressed due to lost therapies. She described the sector as already overburdened and said families are frustrated and struggling without clear timelines or supports.
UN CRPD optional protocol
She concluded by asking witnesses about the optional protocol to the UN Convention on the Rights of Persons with Disabilities (UN CRPD) and whether ratification would have changed the response, noting the protocol has not yet been ratified. The question remained open in the evidence session.
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I just want to thank firstly the speakers and the witnesses for coming in today. I have a number of questions and I think probably a lot of them really are going to be more relevant for the department this afternoon. I want to ask you specifically, Deputy Murnane O'Connor mentioned it, around the adult day services. Have you any understanding of when they are going to reopen, what guidelines? They seem to have not gotten any information or guidelines and it's a huge concern in that sector. So has anybody on the witness list there, do they have any information on that in relation to adult day services specifically? That's the first question. The guidelines that have been issued by the HSE don't contain dates and quantum of service within them. The only reference to quantum of service is to say that it'll be a reduced level. Anecdotally, we've heard back from some people that their family member will, you know, the service will begin to ramp up after the August holidays. We've had contact from a few folks saying September 7th seems to be a date that a couple of services have given out. Worryingly, a few folks have indicated they're looking at December and January. Thanks very much for that. That's actually shocking to think that people would have to wait that length of time, but to a certain extent, in relation to people with disabilities or additional needs, we just seem to continuously fail people consistently in that category. And we're always seem to be talking about, and not even in relation to COVID in general, the waiting lists and the fact that everything is just a battle and you have to always seem to be accepting a different standard. It's really, really frustrating. I can't even imagine what it must be like for people themselves and their families. That kind of brings me into the next question, which is, are you aware of, was there ever a specific person appointed to the NPHET committee or to tie in with NPHET in any way in regards people with disability? Because it seems to me like they've been totally forgotten about. And I know you can't have absolutely everybody on a committee, but it does seem that it was a very crucial category that they didn't provide for. And I would agree with, it's a big, like the subgroup, the subcommittee, and we represent the vulnerable disability on the vulnerable subcommittee of NPHET. And it has been difficult. Obviously, it's a big committee. There's like over 30 on it. And the one thing I would say is maybe try to speak more loudly. Sorry. Sorry. One thing I will say, sorry. The one thing I will say is that it has allowed because of the broad breadth of representation like disability in the in the pandemic wasn't going to be resolved by health alone. So the really good thing about the vulnerable subcommittee is you had the COVID response. The community COVID response was also sitting and reporting into that committee. And many people with disabilities and their families are really dependent on the local responses that were happening ad hocly through the community response. And so whilst we and I would say within disability, within within HSE, we did do a very we committed to responding and putting in place as best we could an initial emergency response to the pandemic. Any issues that we as a sector felt could not get resolved, we did have the capacity to then escalate it up to NPHET. And I think that having less than 16 people, 16 too many, but 16 people with disability in residential services to pass away as a result of COVID. And I suppose does speak volumes when you look at what happened in the difference between us and our counterparts within nursing homes. And I would partially say it's because we had that link in between us. There are some outstanding issues. I do think as we the as the decisions around wearing a face wearing a face mask is definitely a problem for the deaf and hard of hearing. And that's an ongoing issue that we still have with NPHET as as we do with the whole issue to do with with which some of you have brought up here today, which is the whole things how you're going to support those to continue to cocoon who are medically vulnerable. So they're two outstanding issues that we're still waiting for NPHET to give clearer guidance to our sector on. With all due respect, I would say there's a lot more than those as outstanding issues because I don't think I've spoken to anybody with a disability or their families that find the response to date acceptable. I mean, people have just been totally abandoned, the PA hours caught home help is not coming in, you know, just no dates as as it was just clarified there for the resumption of some services, December, January, you know, and already a sector that was so overburdened with waiting lists. And, you know, like even from from a children's point of view, for example, all the various therapies, so many of them have regressed. So I think and that's why I think it's important that there would have been somebody I know it's not necessarily a decision for yourselves, but we can bring it up with the department later. But I just think that the group has been abandoned. And just on the point of masks, a number of people have contacted me over the last few days since that announcement was made, particularly in relation to people with autism and people with sensory issues. around having to wear a mask and, you know, if that's not made clear, and also if it's also not made clear in the public, people will start, you know, there'll be this whole thing about why aren't you wearing a mask? So it's really important that that's made absolutely clear. Otherwise, you're saying to people with disabilities, stay inside your house and don't bother ever interacting, you know, and it's really important that that's not the message that goes out. I have one last point, and it's on the UN CRPD. I just want to ask the opinion of witnesses if we had ratified the optional protocol, which we still haven't, we need to do in this country. But if we had, how would the situation have been different? Because I think myself, people would have had a little bit more power because they would have known that they would have the right to potentially take a case to the UN. So I'd just like to see your opinions on that. That's it. Thanks, Chair. That in a sense, often what happens, change comes about because one individual is able to very concretely demonstrate how the state has failed. So I think if the optional protocol had been exceeded to by Ireland, I think it might, it might have made a difference in the sense of the ability to demonstrate very concretely the impact on an individual. It's unfortunate that has to happen. It often happens in situations that change is brought about because of a very visible example of where the state has failed. But I mean, it's very clear the state itself does need the protocol to know what has to be done. We know what has to be done. And it's really about the issue of delivering on the promise that the state has made with regard to human rights and equality. And the equality speaks to the part that really we need to have participation by all the citizens. And in order for certain people to be able to participate, they need the supports that have been spoken about here today. And that is to allow them to participate and live a full life where their human rights are respected and where they are equal to all citizens of the state. That's what it's about. But I think you have a point with regard to the protocol. And I think that's obviously something the state should address. Thank you. I just want to come back in on a point that you made, and it's just really important. See, there's a little bit of time. The next is from Gail, Deputy, oh, sorry, Dr. McCarthy, just but very briefly, please. Yeah, just to say, just a really interesting and a very important point, and I'm hoping it's something that will resonate with the committee. And you talked about the, you know, the lack of clarity around the community supports. And I think that's something that we're, I suppose, one of the main messages we want to leave today is the fact that, whilst NEFET did provide a pathway to understanding and looking in at residential services and the challenges there, we really need in this break before the next wave or if the next wave should come, that we provide the same level of clarity to the community supports, those PA in the home supports, that there's an expectation that NEFET will give those guidance and will invest in those services so that families and individuals aren't feeling left abandoned like they are right now. It's really important. Thank you very much. Thank you very much. Thank you. I would like to bring... I would like to bring... I'd like to bring... I would like to bring...
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