Oireachtas Joint and Select Committees
Thursday, 20 October 2022
Joint Oireachtas Committee on Disability Matters
Supporting People with Disabilities to Live in Communities: Discussion
:
In the staff's self-reports of what it is like to work there, many of them use war terminology. It is like going to war and the closure of these places is very difficult. We are asking people to change long-standing institutional beliefs and practices that have been there over a very long period of time, as Ms Doheny pointed out earlier. It is not today or yesterday that these congregated settings have been there. They have been there for generations. We are asking people to change, to take on new roles, to develop new relationships, new values and very much new behaviours in how they work and how they approach that work. We are asking people to unlearn many behaviours and when people are managing that kind of change with staff, they can no longer be that buffer. There has to be that questioning and that time for discomfort. They have to be able to feel the pinch of that backlash that is coming. As one can imagine all of that is a highly emotive and an emotionally charged arena to work within.
What we have found from that is that it really is about capacity building, as Ms Doheny said. It is really about the person at the centre of that and sometimes the person gets forgotten at the beginning of this change process because everything is coming at one. There are HIQA orders, closure orders and media attention and rightfully so in that context. When one begins to unpack it and unpack the layers, there are very ingrained beliefs and practices that have been there and have served a purpose for a long period of time. To bring people around, the staff really need an opportunity and ability to work their way into reform. Whether that is through fidelity to a model, such as social role valorisation or the supported self-directed living, SSDL, model, Ms Doheny spoke about, they have a life boat and a way of being able to look at it and to change their practice by doing and not by theory, not by a nebulous concept or not by necessarily following a policy about which maybe all staff do not all know, that is, that policy implementation gap they are living in. That gives them the life boat and that is very much from the person-centred approach, that will and preference of the person.
As Ms Doheny also identified, it is about the time to do that for staff, the resource available and the training required and that the person is at the centre. All of a sudden one is spending a huge amount of time with an individual. One staff member told us she had worked with a lady for 30 years in the same setting. She said that it was only in the last six months that she realised who that lady was. She said she knew her as a client or as a patient but she never knew her as the individual she was. That was very telling.
The other aspect is that staff are transformed. Staff go on this journey but the person is at the centre of it. The person is the catalyst and the one pushing the agenda, pushing their will and preference and their right to move out into the community, to go back to their families and to go to the local GAA match, all of the things we take for granted. That gives staff their own journey of discovery and their own way of acting into it. It is that transformation among staff who have been there for a long period of time. Much of the time they can have the greatest challenges in moving in this way but when they move, we have found, whether from the research or the service reform fund, they move fundamentally and that transformation can occur. Again the person is always at the centre of that.
As regards how challenging it is, the research has definitely uncovered just how challenging it is but in terms of how to move that forward, there are many lessons to be learned. Through the research, we took cases of decongregation, where they were in the middle of it. They were in the middle of the fire. We took the lessons learned from persons in charge, community connectors, heads of service, heads of social care and everybody who was in this who had a skin in the game. What we took from those lessons was around what one does. As I said, there is no one way to do this. It is very complex systems change. There are many voices in the room and there are problems with different solutions. Using the business case and the Harvard business model, we took a teaching case and we brought people back into the room and told them what had been learned. It was not about the lessons learned or about the model. We said that if one is at a fork in the road and one takes the right turn, there are pluses and minuses to that route and that if one takes the left turn, there are pluses and minuses to that route. We asked what the least harmful scenario within this was. It was very much taking a business case and taking people around the country and, prior to Covid, bringing them into that workshop facility. We had huge sessions with 70 to 100 people from different organisations represented. For the people in the room it was very real and very raw but they could relate to it. That relatability is very important when people are in the midst of that change. It is taking the research and taking the lessons learned but making it very applicable and relevant to people. It is incremental change, so they are able to do something on Monday morning and are able to enhance that practice.
Through Covid-19 we moved those sessions on to webinars and again we ran six sessions in collaboration with the HSE national office so There is that feedback loop going back continuously. We found that there is no one way to do this but in order for that to sustain and embed it is incremental changes that get made. It is not very sexy or overly attractive it is that hard grind a lot of the time on the ground with the people. However it is the transformation in the lives of the people who are bring supported that reall,y staff have said "I am happy to go to work. I have hope. I know my practice was less than and very much less than previously. But I had an a-ha moment and I am able to move forward with that". They go on a journey then together. They leave the congregated setting and a lot of the time we say that is really the start line. People feel that they have arrived and are there but it is really the starting point in terms of community living and the UN Convention on the Rights of Persons with Disabilities in particular. I hope I have answered some of Deputy Cairn's questions.
During Covid-19, we moved those sessions to webinars and we ran six sessions all in collaboration with the HSE national office. We have that feedback loop going back continuously. We found there was no one way to do this but for it to be sustained and embedded, incremental changes are made. It is not very sexy or overly attractive and much of the time it is about that hard grind on the ground with the people. There is a transformation in the lives of the people who are bring supported. Staff said that they were happy to go to work, that they had hope and that they knew my practice was very much "less than" previously, but that they had had an a-ha moment and that they were able to move forward with that. They go on a journey together and leave the congregated setting. Much of the time we say that is really the start line. People feel they have arrived but it is really the starting point in terms of community living and the UN convention, in particular. I hope I have answered some of Deputy Cairns's questions.
No comments