Mr. John Dunne:

I thank the committee for the opportunity to contribute to its pre-legislative scrutiny. Mr. McGrath made a comment at the start of the meeting that he is not worried for himself as he is perfectly capable of speaking up for himself, but he is worried for the people who cannot. Mr. McGrath and Mr. Kearns represent the people who will have the most to gain from this legislation, which is very welcome, but we must remember those who cannot speak for themselves, even under this legislation. Dr. Harnett made a point about the importance of staff in disability services and the relationships and insights they have. The fact of the matter is the most important cohort of supporters for people in that situation are their families and family members.

Family Carers Ireland is the national charity that supports family carers, of whom there are approximately 500,000 in Ireland. A wide spectrum of people care for loved ones, which includes children or adults with physical or intellectual disabilities, frail older people, those needing palliative care, and people living with chronic illness, mental ill health or addiction. Every family carer wishes the best outcome for, to use the words in the legislation, their "relevant persons", and they all want this legislation to be a success but we are well past talking about aspiration. We are now looking at the letter of the law, or the letter of the Bill at least. As an organisation, we have significant concerns in this regard. I will highlight three of them to the committee.

The first comes under the heading of "imminent risk of serious harm". Head 27 of the Bill proposes to delete the provision in the 2015 Act relating to the use of restraint in private settings by decision supporters. When I said I would raise this, I was told to be very careful because it is a sensitive issue. Lest this conjures up images of people locked in rooms, tied to radiators, in straitjackets or hiding in wardrobes, the reality is a good deal more mundane. In order to keep somebody safe at night who is at risk of wandering, for example, the front door is locked. That is a form of restraint. There might be a stair guard for somebody who is unsteady on their feet and would otherwise be at risk of falling down the stairs if he or she tried to go up them by himself or herself; that is a form of constraint. Most alarmingly, it is already illegal in the UK for a nursing home to put a side rail on a bed because for some reason we have to vindicate the right of people to fall out of bed. In nursing homes in the UK, this was solved by having staff calling in and checking on people regularly. The most recent round of cuts means those staff are now gone so the best they can do, and it is in not much of a solution, is to put another mattress on the floor. If someone falls out of bed they will, hopefully, land on the mattress not the floor and will not be too badly injured or too cold before somebody finds them. Those are the practical implications of what we are talking about with this legislation.

If committee members think I am being reckless about this, the original Act spends a good deal of time putting limits and restrictions, such as time, procedural and tests of reasonableness, on the "decision-making representative". It was quite clear that restraint would only be used in a situation where it was reasonable to assess that there was "an imminent risk of serious harm to the relevant person or to another person”. We are now proposing to delete this based on a consultation with an experts' interest group. I do not know what experts were consulted, but I can tell the committee no family members were. The extraordinary thing is, if this amendment goes through, the only way I can see to deal with a situation where somebody is at imminent risk of causing serious harm to themselves or somebody else is to put them into institutional care because it is no longer possible, legally, to do it at home. I cannot believe that is the intent behind this amendment, but that seems to be the effect of it.

To add insult to injury, the heads of Bill also note that the use of restraint in institutional settings will continue to be governed by relevant legislation and guidelines. Our understanding, and I am open to being corrected, is that current guidelines on deprivation of liberty in institutional settings have not been amended to reflect the provisions of the 2015 Act and that this will not have happened by the time the legislation is commenced. Therefore, what seems to be proposed is that in order to safeguard the rights of the person at home around restraint, he or she will be put into an institutional setting where the safeguards provided by the legislation will not be in place. To be clear, the wording is quite explicit. It makes a distinction between the legislation and the guidelines currently prevailing because there will be a difference between the two and there will continue to be until there is a legal challenge. If this amendment goes ahead, we expect several different types of legal challenge to arise quite quickly.

The second issue I want to flag relates to head 25 of the amendment Bill. I must claim some credit for it because five years ago, I was talking to people involved in this field and beginning to learn about it. I was intrigued by something because it all seemed to be based on the wards of court system. The wards of court system largely depends on the fact that any services that are provided through the wards office are billed to the ward, who usually has a large chunk of money. I asked what happens when the money runs out. Nobody was terribly clear about that but it does seem that the volume of supports provided diminishes. The second thing I asked was what happens if there is no large pot of money because wards of court make up a very small minority of the number of people we are going to be talking about. Nobody seemed to have thought about that. Happily, we now have an amendment to deal with it. If there is no fund for a ward of court, the Decision Support Service, DSS, will use public money to pay the decision-making representatives, DMRs, but only if the representative is nominated from the DSS panel, in other words, if the representative is not a family member. The DSS estimates that about 67% of DMRs will be family members. They will not be paid. They will have the same duties and will have to submit to the same accountability responsibilities but they will not be paid. This seems to us to be a case of clear discrimination on the basis of family status. I would like to make that point given that discrimination is another of this committee's briefs.

Our third major concern with the Bill, which is probably the most serious one, is a bit like the shoe that did not fall. It relates to something the Bill omits rather than something it contains. We have been asking since 2014 for a transition arrangement for lifetime caring families equivalent to the one provided for wards of court under the original Act. There are 4,000 wards of court. The system is allowed three years to transition them to the new model. The DSS's own estimate of need for DMRs in 2022 is in excess of 18,000. Five years ago, we estimated it at 20,000 so we were not that far off. A total of 18,000 people, and it is not a matter of wanting because the word used by the DSS - "need" - is explicit, will need this service. The good news is that 1,605 decision-making representatives, or about 9% of estimated need, will be appointed in its first year. At this rate, it will take ten years for people to be transitioned to having a decision-making representative. Given that the spirit and intent of the legislation is to only make decision-making representative arrangements where absolutely necessary, what is going to happen to somebody who needs a decision-making representative but find himself or herself at the back of a ten-year queue? In the absence of a clear answer to this question, we have been asking straight out for five years and have never got an answer. The first confirmation we got that our estimates were right was a report published by the DSS last month about projected need and demand. All it said was "well we're going to need about 18,000, the good news is we'll have less than one tenth of that dealt with in the first year but hey ho". There is no comment on the gap between the two. There needs to be some provision for a transitional arrangement in the legislation. I thank the committee once again for this opportunity to contribute to its deliberations and I will be very happy to discuss any of those points later on.