As part of Learning Disability Week 2017, we held a roundtable discussion on the topic of parents with learning disabilities to coincide with the launch of our new Iriss Insight on the topic. The discussion highlights how best we can support families where one or both parents have learning disabilities, raises awareness of the key issues, and promotes debate and progress.
It involved Bianca Wood, People First Scotland; Gillian McIntyre, University of Strathclyde; Andy Miller, Policy and Implementation Officer at Scottish Commission for Learning Disability (SCLD); Amanda Muir, Development Manager at Equal Say; and David Barr, Assistant Director at Aberlour.
Bianca is chairperson of the People First (Scotland) Parents' Group, a self-advocacy group of parents with learning disabilities.
Read Insight 37 - Parents with learning disabilities.
AMi - Andy Miller
AMu - Amanda Muir
BW - Bianca Wood
DB - David Barr
GM - Gillian McIntrye
KM - Kerry Musselbrook
KM Morning everyone it's Learning Disability Week this week and today we are here to focus ton parents with learning disabilities. Today we are joined by a range of people, so welcome. We have Bianca Wood, People First Scotland, an organisation that works to support people with learning disabilities, to have more choice and control and Bianca is Chairperson of the People First Scotland Parents Group, a self-advocacy group that has been meeting for over ten years now. We also have Gillian McIntrye, one of the authors of the recent Iriss insight and evidence summary about this topic and she is from Strathclyde University. We are pleased to welcome Andy Miller from Scottish Commission for Learning Disability, Amanda Muir Development Manager at Equal Say, an Independent Advocacy organisation that works with adults with learning disabilities and last but not least we have David Barr from Aberlour Scotland's Children's Charity. So, welcome. I would like to kick off by setting the scene a little bit. So why does this matter. Well, we know from the evidence, that families where one or more parents have a learning disability are over represented in care proceedings. It is also estimated that between forty and sixty percent of parents with a learning disability have their children removed from their care. So, Bianca why is this?
BW Well its poor attitudes of professionals who assume we can't cope and think that we shouldn't have children and not enough support from the start. Don't get support right from the start, only after a crisis or waiting for us to fail, saying we can't be good parents, never gave us the choice anyway. There is no ongoing support from when they are pregnant up to the children getting older and it is never the right sort of support, it's support you would get but not to tailor for your needs or the child's needs and then not enough easy read information, letters from schools, doctors, health appointments, dentist. Are not an easy read and it's too much jargon, parents struggle and then they feel they are failing because they haven't attended appointments and stuff. People need to be more aware of this.
KM Yeah, a whole raft of things. What has that meant for families really?
BW Well they end up having their children taken off them or put on a Child Protection Register, having to attend all the meetings and find out why they are on the Register, what's about and why they have supposedly failed as parents, when they haven't. It's just they weren't offered support to be good parents. If you show them and tell them, they will usually get it. Because they do have understanding of communication and as long as the child's needs can be met and they are loved that shouldn't be a barrier, to take them away and put them in another setting and children do understand and recognise different people coming in because they know who the family is and family members and friends so they should know who professionals are and what they are doing to help the mum be a good parent, that mum will need some support but if they can get more then that's better.
KM Yeah and the right kind.
BW and the right kind because they do struggle a lot. It also leads to a lot of fear and sometimes mothers are scared to say they have got a learning disability incase the doctor would say, "oh why are you pregnant or why do you want to have children" because it's something women do and they shouldn't have the fear that they can't have children or they can't be good parents. They should be able to have it without fear, think well it's ok I do need support, I must accept it and then I can be a good mother to my child or however many I have.
KM So, they need to have a sense about who these parents are to be able to help them.
BW It's difficult.
GM I was just going to say Bianca I think that's a really important point, fear and I think what fear does is it acts as a barrier so people are reluctant to come forward and ask for help and stuff.
BW You won't say you have got a learning disability because you are scared incase you do say, why the doctor who said "why you pregnant". Why should doctors be saying things like that?
GM Even in this day and age there is still a lot of negative attitudes about people with learning disabilities having a family and that is something I think that is really important. I think just going back to the research evidence that says where these figures come from that forty to sixty percent have their children removed. A lot of the evidence suggests that, that's because of neglect by omission rather than purposeful abuse. So, parents with learning disabilities aren't deliberately abusing their children, they maybe just don't know what to do in certain situations which kind of supports the point that Bianca is making about the need for early intervention and support at a very early stage.
BW No, they just don't know.
BW You can't get enough support, you can get a little bit of support but it is never long term and it is only to fix the crisis and when the crisis is over the support is gone and then there is no more and if you are stuck in another situation and then they end up in Child Protection Registers and that's not your fault, then you have got to try and get them off it and stuff.
GM So these figures can actually be quite damaging because they suggest that parents with learning disabilities aren't able to parent appropriately but actually...
BW Or, you think you are doing something right but they are saying well that's not right because it is not normal. You should it differently but you are doing what you think is right at the time and then they end up in units and things, YPC's which is when they are older because you have not been able to set boundaries, but how do you set teenage boundaries when they are pushing and know what buttons to press.
KM David, you wanted to saying something?
DB I think that experience that Bianca is talking about is one that we are very familiar with. We have seen lots of examples of it and we have heard examples of it. The good news is and I think that's the good news of today, it's possible to do something about that and Bianca also spoke about the poor attitude of professionals, that's also about a lack of awareness and lack of understanding and again what we are hearing from people is that when they see that there is an alternative way of understanding this and they begin to have their eyes opened to perhaps some of prejudices that are around and their behaviour, the way their attitudes are affected what they are doing. Lots of people have come to us and said we now recognise the need to do something about that, we want to see it improve. We organised the conference, helped organise a conference at the beginning of March, there were lots of people who came to that and said, wow, look how much is happening, we could really learn from this and our hope is that we can build on that and really encourage people to start to think about how they can consider the support needs of parents with learning disabilities.
BW What we actually need to do is more training and we are going to do training for health visitors and midwives because they have been overlooked. A health visitor now goes into a women's home before she has the baby to check so if we get them trained up they can then help the mother who is disabled and pregnant getting support when she comes out the Hospital because we heard stories of one women from Inverness who didn't get support and she was depressed and down and they took her baby off her, which is really hard.
KM Andy, you wanted to say something.
AMi Just to say pick up on what David was saying about the importance of getting the right support because what we have seen the evidence from evaluations of services such as Aberlour's is that when good support is in place then there are good outcomes for children and we have seen children coming off Child Protection Registers, children returned to families, children's attendance at school improving all the positive indicators you would want to see, you do in fact see when the right support is in place.
KM There is also stuff in the lecture that talks about a good parent or a good enough parent. Can somebody explain to me what that is?
DB Well I want to try and avoid getting drawn in to the detail of that but one of the things that struck me when I seen this question was that none of us are either a good parent or a poor parent all of the time, there are times when we will feel comfortable in the parenting role and there are times when we struggle and there are lots of things which impact and affect that and I think when we are thinking specifically about parents with learning disabilities we have got to remember how that sits within, how you understand parenting generally and all of the things we have learned about how we support all of our parents to be good parents. What we have learned here is that it is very important in making decisions about how a parent with a learning disability is coping is very important that all of the voices are properly heard and a very very important that the voice of the parent is heard and I think what our experience is that sometimes the previous experience, the previous understanding, the previous awareness of how parents with a learning disability can cope gets in the way of good decision making. So, in some ways I suppose what I'm trying to say is that as we try to understand what makes a good parent when we are working with a parent who has a learning disability we first should make sure that we properly understand what that means and we look at what has been written, we look at the research, we look at supported parenting, we look at the Scottish Good Practice guidance and we think, now how do we understand this. So, I think it's not a straightforward question about what makes a good parent, it's about for this family, in this situation, how do we best offer the best possible support to give them a chance to become the best parent they can be. I think I might just have avoided properly answering that question. But maybe that's enough to get started.
KM Amanda, you wanted to come in.
AMu I think one of the things that a lot of the parents that we work with experience is when you go through the process of being assessed they feel that they are under a, perhaps a much higher degree of scrutiny than another parent might be and that put them under additional pressure, they often feel that because there is no clear goal, no clear line that they need to achieve that the goal post shift, so they are halfway through an assessment and they have been told they are doing really really well and then another issue is brought up and they then feel like they are having to start again and they feel like they become this constant treadmill of never quite being good enough and asking the questions when is this going to end, when am I going to be assessed as being good enough and I think that can be a real problem with parents when there is no clear definition at the beginning of what it is that the expectations are of them and their parenting.
AMi I think every parent has experienced that feeling of not being good enough and it is a very vulnerable time you are intensely critical of yourself and that, for a lot of people, that's with all the support and encouragement they often get from round about. So instead of getting that support and encouragement you feel judged and criticised from everyone around about you. It is incredibly hard to perform well as a parent and not just to get obsessed with how well or otherwise you're doing. It is really important that if parents with learning disabilities are being assessed about whether or not they are good enough parents to continue as a parent that you don't make that judgement without putting the support in place first. If you are judging people without putting the support in place that could make the difference and that's an awful harsh judgement.
BW I think that Social Workers have not had experience in working with parents with learning disabilities and we need to get some training out there for them 'cause they don't understand what the problems are and need to know its ok to parent with support as research shows this, as long as you can put your children's needs first there shouldn't really be a problem but we do need to get training for social workers because they just don't understand. Too many problems. They just see the child could be at risk, remove the child, which is not always the right way. Get support in place for the parent and then the child will be fine.
KM And what about early intervention, there quite a lot in the literature about the importance of really early intervention including before the child is born. Would somebody like to pick up on that?
AM I think the earlier you put the support in the more likely you are to get good outcomes. That's the main reason for early intervention and the flip side of that is that if you leave putting in support until later on, for example Child Protection concerns are being flagged up then it is often too late or the kind of support that then goes in can change. So for both those reasons it is important to get the support in as early as possible.
BW You should actually support the woman when she is pregnant and say right we see here uniforms, you have got a learning disability, what can we do to help you so you are not left in hospital in fear of losing your child. Can we help you so that you can get the baby home and have the right support in your house and make sure the parents don't feel judged or criticised cause sometimes they feel like that or make sure the support is hands on, one to one in your home from someone you trust and it needs to be flexible so that they can do when the babies get older, the different stages, that kind of stuff.
KM Because children don't stay babies for every do they.
BW You would need checklist up on the wall, prompt and reminders, calendars, easy read information and see whether the parent can deal with text or phone calls, what works for them, how they work it so that they can get the baby home, show them how to feed, how to breastfeed or bottle feed, how to make bottles up and when you have shown them a few times, do a checklist and put it on the wall and then they can.
KM That's really helpful cause my question was going to be, so what does look that?
BW If you get an A4 paper and you draw pictures of how it is done and write and laminate it and stick it on the fridge then they can work out what they have to do, at what times and how often they have to feed and understand babies crying. They need extra help and support, that's what it amounts to but if they get that they should be good parents and they also need independent advocacy is a must. If you have got an advocate to help you, you get there.
KM That's where Amanda comes in.
AMu I was just going to go back just to say there is a couple of challenges around early intervention and the first thing is actually knowing who the parents are in the first place and there are some issues in terms of actually identifying the parents and that goes back to I think a lot of the points Bianca was making at the beginning when talked about people being frightened to come forward. As a rule, we are not really clear about who the population is that we are trying to work with, so that makes, and that is all around things like how we define a learning disability in the first place, so that makes putting support in at an early stage really challenging when we are not a hundred percent sure who the population are that we want to work with. Then can I go on to the point that Andy was making, I think the current way that the system is set it up is that it is very crisis driven, so rather than being able to provide that support that Bianca is talking about, that really nice preventative low level work that will enable the family to continue to function what happens is we wait until things reach crisis point and then that's when support is put in but often that is not seen as being very supportive.
BW Not good enough, not acceptable either.
AMu And, it usually results in the child perhaps being removed.
BW I can see why parents don't come forward because they are scared and if you have got a doctor saying, why are you pregnant and you think, oh maybe I shouldn't be, maybe I shouldn't be saying anything, so you keep quiet and just hope that everything is ok and social work get involved. Not good you know.
AMu It's not good, so there is a couple of things ...
BW And, your mother telling you, you shouldn't be pregnant, you should have an abortion, your like nope, not happening. It's horrible you know.
AMu I know, I know.
BW People I suppose before didn't have babies, they were put in institutions, nowadays they are not. Parents raise them, so they are going to want to have children, it's a women's right, women want to, if they meet someone that can do that, then that's what they want.
AMu So I think that means there is a couple of things we need to get better at and that's diverting resources to preventative work and also identifying the families at an earlier stage.
BW Also children don't seem to be too affected by it, some of them, and they understand that the parents got a problem, that's why we had difficult upbringings, but its ok, you had support, we turned out fine in the end. They then go onto have children, so it's not that bad.
DB I think again we have seen some good news on this, particularly in South Ayrshire we have seen quite an increase in the number of people being referred pre-birth and that has happened as a result of working closely with people over two or three years, raising awareness and I think when people have the opportunity to see what a difference can be made, when assessment and support is offered early enough, they are more likely to refer someone else again the future but this is an ongoing piece of work, sixty three percent of the parents we work with in South Ayrshire don't have a diagnosed learning disability. So, there is a whole business of helping to raise awareness about when that support might be appropriate, who the support might be offered to and having in place the awareness and the skills from health visitors, midwives and social workers so that they understand how to go about offering that support and when all of those things are in place together it can really make a huge difference.
BW That's why we are going to start training sessions and we have got one next week for, is it health visitors?
BW Midwives and then we have got more in the future for Health Visitors so if we get them trained up, so they can maybe find it easier to spot a women if she has got a problem and she is not telling us, so it will be easier for them then to help the women get the help she needs.
AMu I would echo that, I think that over the last seven or eight years we have been running an advocacy project specifically for parents with learning disabilities. When that project started we would typically receive a referral when social work were making decisions about the permanent removal of a child from their parent's care, now we are much more likely to receive a referral at the point of birth, just after birth, we are much more likely to receive a referral from a health visitor who is saying, this family isn't involved in Child Protection procedures but we think they are struggling and we think they would benefit from some independent advocacy. So I think they have come a long way but I think that's come because we are working quite intensively in Glasgow and the professionals have got to know what we do and the difference that it can make. In another that might not be the same because there might not be the same level of support available to parents and I think that is one of the issues that needs to be tackled next.
KM Ok, Andy
AMi So I think part of the picture is identifying when a parent or family, there is a learning need there, that needs addressed and that's where the training comes in that Bianca was talking about. The other part of the picture is that these mainstream professionals, the GP's, the midwives, the health visitors, they need to know where to signpost people to and that begs the question are there services to signpost people onto and in some places that is the case but in many places it is still not the case and so there maybe support from midwives and health visitors, they maybe well trained at working supportive parents with learning disabilities but they just don't have capacity to support them enough and there needs to be this extra level of support, maybe from a third sector in one of two places, social workers have been taken off crisis work so that they can do the more preventative capacity building work and that's brilliant, there is no one way of doing this but it is important that there are resources in place that midwives and health visitors can signpost people for extra support.
KM So, is it about money as well as expertise?
BW I say it's down to funding at times because a lot of the times they don't have enough money so they can't have a joint service working together, its separate services and you don't always get the services you need like adult services and children services do not work together, they are separate and then it's down to funding or the funding is only short term you know.
DB Very often third sector services who are pushing this change forward alongside Health and Social Care Partnerships are subject to short term funding and certainly the feedback we got at our conference at the beginning of March from people was that, that can often get in the way of offering consistent support. You are continuously in a cycle of looking at how you can continue funding support. Now that's also about working very closely with local authorities and health boards but in order to achieve the change that we want, I think it's something we have to consider, how do we support this in the future and how do we make sure that support is offered consistent.
KM Clearly is the parent with a learning disability in one part of the country where you receive much less support than in another.
AMu The research shows that there are clear geographical pockets where there is lots of good practice in other areas and it might be that there is good practice there that we just aren't aware of yet but there are certainly areas where there is a lot of really good work going on at the moment, but obviously that's not ideal if you don't live in one of those areas.
KM Before moving on to maybe where we all hope to be in 5/10 years time and how we get there, I'm sort of quite keen to talk about, we know that children don't remain babies and we have talked about early interventions so what kind of support do we need to consider across a lifespan.
DB Yeah, I don't think it's just about what kind of support but when that support is offered. Bianca gave a really good account of the kind of support that parents need and I think what we have heard from parents is that they need that support at different times, so after a baby is born there is feeding, bathing, all of the things that go with getting used to having a new baby, you then might have walking and talking and development moves on to school and as children get older their needs change. So, we have to have an approach which is flexible enough to make sure that parents, when we get to know them, are offered support through all of those difficult, different parts of a child's life. That is something I can relate to as a parent myself so we have got to be able to take all of the bits we have learned works well, that Bianca described so well and apply them when the support is most needed.
BW Because as they change from babies to toddlers having grandchildren, you need to make sure the home is safe and you have put everything out of reach, safety gates and stuff as they are growing up so that the different thing, cause they don't stay babies, they change and everything gets different and you start to learn different things so that you can make sure that they are going be ok, until they start school and nursery and stuff and then you have got the whole issue of starting school, nursery and registering and getting support to do that. We have made a DVD before about starting primary school but there is nothing about teenagers, boundaries, drugs, alcohol, or being safe on social media. We need support and help with all these things cause that's where the troubles are. We would like to do something that would help parents with teenagers because they don't have anything from sort of video, DVD or whatever, it helps teenager parents and about schools, how you can help with parents' evenings 'cause they are hard as well and if they are at school, what they are doing, how they are progressing.
AMi Can I come back to the question of money, because I think it is about money often but it's not always about money. If you think about schools and how parents can become more involved in schools, you could say, well what's needed is support for the parent, in the home to help them understand the letters that have come home from school so that they can respond at the right times or you could say what the schools should be doing is producing information for all parents, so that all parents can understand it easily, so that you will need, the parents don't need their own support in their home for that.
BW The schools don't because, but now we have gone a different approach. What if the parents first language wasn't English, you would need easy read for that, wouldn't you, but your children always tell you when the school wants money, mum they need money for this, money for that, can you have it, it's this day I need to take money in and they will hand a form to you, sign and hand the money over. So, you do get that from your children but you shouldn't have to, you should know anyway, check the school bag, oh mum you forget there is a letter in my bag it needs to be signed and money go in. If you get this help so that you can know when there is stuff coming cause the school always wants your money.
KM I'm afraid so.
BW It's one thing I found and you also have to know what equipment they need for school, the right uniform, what days they want it, sports stuff, all these things need help. So, it is all about money basically.
KM So, we have heard about some of the things that can help and make that real difference but we have also heard there about some of the gaps and the things that need to be done, more training, more awareness raising, the issue around money, you talking about, as children age and get older there is maybe some little gaps there. What good practice have we got that could be rolled out and what to your mind are the big challenges that we need to crack.
GM I wonder if I could say that one of the kind of key findings from the research that we carried out was around working with the family as a whole, so taking that whole family approach because I think too often what currently happens is we either focus on the needs of the child or the needs of parent and we see them very separately, we don't often look at them as a whole family and that's when problems arise because then the family falls between the gap in services, so if we look at the family as a whole and look at the support needs of each individual within that family, you are much more able to provide support that will kind of allow the family to continue functioning as a unit rather than having that system where we are looking at the child only, so the parents needs get neglected within that, which is what currently tends to happen. So, I think that whole family approach is crucial going forward and I think there is probably a number of different ways that we might want to think about doing that but I think that would be the key message that comes out from the research evidence.
DB I think that's interesting because maybe that just causes us to wonder about what we can do differently when dealing with child protection and that message in child protection for parents generally has been around for a long time, the importance of a person centred strengths based approach but sometimes we still see in these situations the Child Protection system focusing on the needs of the children and forgetting the parents and not listening as well as perhaps they could so the kind of support that could make a huge difference to parents. We still see situations where child protection reports in relation to Child Protection Procedures might arrive with parents on the day, there is no opportunity for someone to go over and explain what's in the report or what's being said, there is not a great chance for parents to go into meetings feeling prepared, feeling supported, this is where your advocacy becomes really important. So, there are lots of things we can learn from what can make things more difficult to help us understand what we need to do to make them better.
KM Do you recognise that Amanda, from an Advocacy organisation.
AMu Absolutely, I would say that the vast majority of parents are not given sufficient time to prepare for meetings, they are often expected to participate in meetings that can last for lengthy periods of time without much accommodation of their needs despite request from advocates, so parents can be sitting in meetings with 10, 12, 15, 20 people sitting around the room and that could go on for a long period of time and sometimes you know as an advocate we can ask for reports in advance but if they are not available then really not a lot we can do about it and of course we need to balance the parents views so we might feel that the best thing to do when a thick report is put in front of a parent, ten minutes before the meeting starts is to state actually this meeting needs to wait half an hour. If the parent doesn't want to do that because they feel under pressure then we need to respect their views and go with that but the parents can be in very difficult situations and it can be difficult for them to give a good account of themselves in those circumstances. I think we do see that through time with that kind of support parents do get better at speaking up for themselves and I think that can make a huge difference to the whole process.
KM I kind of really what to finish up now by being focused on the future and being positive and ambitious for what it is that we want to achieve, five/ten years from now, what victories do we want.
BW We had a ten year birthday party for parents in January and we had about twenty parents and twenty professionals came, we made a wishing line, which is like a washing line with baby grows, and people wrote the things that they wanted for the future, were more parents groups all over Scotland and a national network of parents, better funding for support, more support and ongoing support right from the start, help with homework and schools, better attitudes of professionals, children and families and adult services should work together and where we would like to be in ten years from now, more parents groups across Scotland and a national network for parents. All letters and reports should be in an easy read format, easy read information about bringing up teenagers, parent can get the right support from start and support would be ongoing so parents all across Scotland can get the support they need not just in some pockets in small areas, it should be the whole of Scotland and there should be a national network for parents where they can link up and meet and discuss what works for them in other areas so they can work it in this area.
KM It's a good vision I think. Others.
AMu I think for me, I think Bianca, your point about parents being able to come together, is really really important. We had a consultation event not that long ago and the vast majority of parents that attended talked about feeling stigmatised so when they go to other groups they felt stigmatised and they said one of the things they really valued most of all was an opportunity to come together with other parents who had learning difficulties and talk about their experiences with people that had shared similar experiences. That can be empathised highly enough in terms of the value that that has for parents in terms of how they feel about themselves and their confidence about being part of a network, being part of a movement that is seeking to change things.
BW If you have got parents at different ages they can give you experience, you can give them experience of what you have been through when your children grew up, how it was for them that have got babies, how it will be and how you can make their lives different. You can change their lives so they won't have to go through what you went through.
DB I think to just add briefly to that parents also as well as talking about being stigmatised talk about being lonely and isolated and all of those things can have a huge impact on mental health. So, if you can help people build up a network, a community and connect and use that community to connect with the local community, 'cause local communities are much more welcoming than sometimes we expect them to be but people need confidence to do that, they need support, they need skills so parent's groups can be a really important way of helping parents make that move into the local community which helps them to learn how better to support everyone in the community.
GM I think peer support is crucial and I think we are increasingly recognising that, for many different groups who might have been excluded or marginalised, they are actually coming together with people who share that same experience. It's really important in building up your confidence and it's all about capacity building, then allows you to make those broader links within local communities.
BW Or, what they could do is join other groups like People First who have different groups in the local areas and get involved in stuff there, and then they will get help with other issues and things they might have, and meet other members and have discussions which is what I've done, and that's really good.
DB Scotland has this ambition that it should become the best country in the world for children to group up in, and to my ambition for these families, is that it's the same ambition and the same reality – that it's a brilliant place for children whose parents have learning difficulties to grow up in.