Podcast Episode: Achieving permanence for disabled children
What follows is a transcription of the audio recording. Due to differences between spoken and written English, the transcript may contain quirks of grammar and syntax.
MD - Michelle Drumm
LB - Liz Brabender
TB - Tam Baillie
MD On the 10th of October 2014, Iriss.fm attended an event, ‘Achieving permanence for disabled children’ which was held at the Teacher Building in Glasgow. The event was held to discuss a new piece of research, - achieving permanence for disabled children and young people in foster care and adoption. The research was produced by Vicki Welch, Senior Research Fellow at CELCIS, Kirsten Stalker, Professor of Disability Studies at the University of Strathclyde and Chris Jones, Lecturer at the Child Protection Centre at the University of Edinburgh. Liz Brabender from CELCIS tells us the purpose of the event, what permanence means and the importance of the research.
LB My name is Liz Brabender, I lead the Permanence and Care Team at CELCIS and we have been charged through the Scottish Government, to help partners right across Scotland improve permanency for children and young people, obviously including children with disabilities. Permanence is a childs ability to be claimed by a family unit, that can be their own family, so it could be a return back to their own family of origin, or it can be with kinship care, or it could be with a foster carer or a doctor, or in fact it could be in residential care where you have a significant relationship with a group of key staff. So it’s really permanence around the care plan for the child.
The point of this event today is to continue to raise aspirations and expectations in terms of permanence for children with disability. They are too often missed in terms of being claimed by families, they are too often missed in terms of research, they are too often missed in terms of practice, and part of our job is to raise the awareness around some of those issues, but more importantly, to come to some resolution and ideas about how we improve that practice going forward.
Research is critically important, it’s frightening to listen to the literature research to see just how little focus there has been on children with permanence and disability in Scotland. It’s frightening to see how little research there has been right across the world, so therefore it’s really important that not only have we conducted the literature review, but that we actually are engaging with an audience today of key stakeholders about how do we move things forward, including putting in further bid for funding for a more in-depth research to this area.
The next steps will clearly be, we have extended to the audience an invite for them to give us further suggestions about what else we should be doing and I would hope we would be able to get some good feedback today. We have run 2 previous knowledge exchange events in terms of disability and permanence and that has actually created quite a positive head of steam about what peoples aspirations are and what some of the challenges are and how we break those down, so it’s really important in that sense.
MD Tam Baillie, Commissioner for Children and Young People, gives the context for the event.
TB I see it in a much … the context in a very broad sense, and firstly it’s within childrens rights, so I was reminding people of the different articles within UNCRC, in particular Article 2 about non discrimination, Article 3 about best interests, Article 6 in terms of a childs right to maximum development, and Article 12. And particularly Article 12, I was reminding people about a childs right to have an opinion, to express that opinion and due weight to be given to it. And we know that very frequently, children with disabilities are not given that voice and are not given the opportunity to articulate, or in some way express their views. So I was just reminding people of that context. But of course there are other articles, such as articles in relation to disability itself, in relation to health, and given that we are looking at children who are in a care context, so there’s particularly articles in the convention with regard to foster care and adoption. And the reason for doing all of that was just to remind the participants about the heavy footprint of the UNCRC on the deliberations today.
MD He describes the challenges for achieving permanence for disabled children.
TB We have got challenges in terms of a looked after system in any case, in terms of assessment, in terms of appropriate placement, in terms of stability of placement, and we have got challenges in terms of children with disabilities, again, they are very similar, terms of assessment, access to resources, parents feeling as if they have to fight for services and for appropriate responses. So when you combine those within our care settings, then you have got a particularly acute range of issues about the appropriateness of the assessments, there’s even dubiety or some debate around what qualifies as a disability and what doesn’t, and that’s been very well articulated with the research that’s been done today. We do have challenges in terms of appropriate placements and all of those issues in terms of stability of placement, but particularly with regard to this group of children, it’s about, so where do they move to, how do we manage to build stability and permanence in terms of the placement, and it was really interesting to hear the researchers shed some light of that, and I think that will be very useful.
MD What do you think are the important next steps then, following the publication of the research?
TB Well, I reminded people of some quotes around recommendations that are made, in all good faith, so only last year we had a recommendation of 3 placements for each foster placement, which I entirely agree with, but I was able to quote from a document which had a very similar recommendation, published in 1950, so one of the key messages from today is that once we understand what the research is telling us, is to be assertive in what we do with that. And so we don’t want to be here in decades time trying to figure out how we improve permanence arrangements for children with disability, because it sounds as if we have got sufficient information just now to start to improve our response to it, despite the fact there’s a whole number of gaps in our evidence, but there are certain things that we could do to better prioritise this group of children and giving them the same right to a stable and supportive environment, which will develop them to their maximum capacity.
What today is doing is shedding some light on those characteristics that we know about and the need for us to better prioritise this group of youngsters within a looked after service, and I would say even just to get some agreement on who are those children with disabilities who we are looking after, that would be a useful starting point.
One of the glaring gaps, is about the voices of children and young people with disabilities, and this isn’t just in the field of looked after, for me, this crops up time and time and time again, and I think it may be because people don’t feel that they have got the skills or they can overcome the communication barriers, but it is one of the areas that appears to be most neglected in terms of giving voice to those children and young people, and if only we did give voice, allowed those views to become better known, I think that that would be one of the key spurs for us to actually change practice and improve practice for this group of children.
MD Chris Jones tells us why the research was undertaken and gives an overview of the quantitative and qualitative findings and recommendations.
Chris Jones: This piece of research came about because of our concern that disabled children don’t necessarily achieve the sort of outcomes that would aspire to achieve for them when it comes to permanency, so things like long term fostering, adoption, kinship care. So we wanted to do a piece of research to help us understand why is that, why don’t we achieve the sort of outcomes that we want to achieve for this group of children. So we did a scoping review, the sort of review that would be quite inclusive, so we weren’t interested in just looking at what the quantitative evidence tells us about what happens for disabled children, we also wanted to find out what the qualitative evidence tells us, so we looked at literature from across the world, it just so happened that most of it happened to be from the US, about half of it was from the US, but we looked at 88 papers in total, that all told us about different aspects of permanence for disabled children.
The quantitative data, that was mainly outcome studies that had been done in relation to disabled children and permanence, and the sorts of messages that came through from that research were broadly that disabled children are less likely to be reunified with their birth families than non disabled peers, that disabled children tend to wait longer to achieve an adoptive placement than their non disabled peers, they stay in foster care for longer. Quite often disabled children are more likely to be placed out of their local authority than their non disabled peers, and obviously that has implications for things like contact, ongoing contact with birth relatives, if children are placed in a different geographical area. And also disabled children are more likely to experience a disruption of placement, so for a placement to break down, and that was particularly the case for children with mental health difficulties and children with behavioural difficulties.
The general message that came through from the research that looked at particular characteristics of children in relation to outcomes, so whether that characteristic is the age of the child or the gender of the child or the ethnicity of the child, or the type of impairment, that there are no simple messages to take from that, so there’s no simple relationships between any one of those characteristics and what the outcome is, and in fact this is probably one of the gaps in research that we’d like to highlight, that there’s a need for more sophisticated quantitative studies that look at how these characteristics interact and create particular outcomes, and we haven’t really undertaken that research yet.
The most disappointing finding for us was when we looked at the research that’s reporting the views and experiences of people who were involved in some sort of capacity with permanence, that we found that there weren’t any studies that had directly spoken to children and asked for their views or their accounts of their experiences, which is really quite a shocking finding, I think, that there wasn’t a single study that had done that.
The other things that we found out from the qualitative study, we found that there were particular challenges for carers in relation to accessing services, so that’s both specialist services, so things like health services, mental health services for disabled children, are difficult to get access to if you are a foster carer or an adopter, but also mainstream services, so things like mainstream education, leisure services, are also difficult to access, and carers quite often talked about their role in terms of a fight, so having to fight for services and fight for access to these things that were quite essential to a successful placement.
Carers talked as well about the type of support that they would like to receive, so for themselves, they are looking for advice around their entitlements and financial support that might be available to them, things like emotional support, they are looking for advocacy on their behalf as a carer, as well as recognising that advocacy for the disabled child is needed. And carers also spoke about the stresses that a lack of support and a lack of access to services places on the family, and obviously those sorts of stresses can then become a risk to disruption to a placement.
As well as talking about care and access to services in terms of a fight, carers also talked a lot in the research around the satisfactions that they gain from caring for a disabled child, specifically, so being able to develop a really close relationship with a child, to receive affection from a child, to be able to see a child make very small developments, to learn new things, and often to make those developments in what is quite a challenging context for the child, so to do these things almost against the odds is very satisfying for the carers who choose specifically to care for disabled children.
In terms of what do we do about all of these difficulties that we’ve identified through the research, there were some suggestions that were made by both carers and professionals within the literature, so one of the things that they talked about was the need for us to adopt a strengths based approach within our work, so rather than all of the focus and the work that we do around disabled children being on the difficulties that children have, the type of impairment and the implications of that for the care of the child, that we need to start thinking much more about the whole child and all of the things that make up them and their personality, rather than just focusing on their impairment.
The other things that people talked about was the need to promote some of the success stories around, there are disabled children who are in very stable, very loving, very successful placements and we need to promote those stories a lot more, so that people can open their minds more to considering maybe becoming a carer or becoming an adopter, but also so that people can see some solutions to some of the challenges that they come up against.
There was a sense from the literature as well that we shouldn’t think of disability as a separate part of practice that we need to deal with in a separate fashion, so how do we make sure that our thinking about disability and what’s needed is integrated through all of our practice, so it’s included in policies, it’s included in good practice guides and even things like promoting children who need adoptive placements, so making sure that the children who were promoted, that they are a diverse groups of children promoted, so that whenever there’s a promotion, there’s always a disabled child, so that disabled children are included all the way along.
There were also some, quite a lot of suggestions made by professionals and carers in terms of technology and a sense that we probably underuse technology as a way of removing barriers and including disabled children, so for example using computer technology so that children can have a voice and can be included in assessment processes, for example.
One of the key purposes of the seminar that we have had today, is not only to feed back some of the research findings, but to start that dialogue with practitioners, the people who are out there on the ground doing this work day to day, about what it means for them and also to draw on their expertise, their ideas about how we now move this agenda forward and start to change practice. So there’s certainly more research that needs to be done, our researchers … as research often does, identified some definite gaps in what we know, but we can see already that there are some very definite practical steps that need to be taken and we want to do that alongside practitioners.
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