12
Examination of witnesses
Caroline Coady and Anna Bird.
Q26 Chair: It is my privilege to welcome you this afternoon to the 38th meeting in this parliamentary session of the Joint Committee on Human Rights. Appropriately, serendipitously, today we celebrate Human Rights Day, which marks the 77th anniversary of the adoption of the wonderful and extraordinary Universal Declaration of Human Rights. We also this year celebrate the 75th anniversary of the European Convention on Human Rights and the 25th anniversary of the Human Rights Act coming into force.
Before we start and to commemorate those events, I wanted to take a moment to look back at some of the work of this committee that we have done this year and before in examining human rights in the United Kingdom. We have held 22 public oral sessions on a wide range of topics, such as forced labour, the Mental Health Bill, transnational repression and the Crime and Policing Bill. We have scrutinised the work of the Government, hearing from the Lord Chancellor, the Attorney-General and other Government Ministers. We have published nine reports and seven special reports, looking at issues such as the United Kingdom’s response to Daesh crimes and transnational repression, all of which are available to read on our committee website.
We currently have two open thematic inquiries. One of them is looking at the regulation of artificial intelligence—AI—and its human rights implications and the other at children’s social care. Both of those inquiries will be reporting next year. As we commemorate and look back, we appreciate that there is a lot of work still to be done. The committee looks forward to continuing its work to promote human rights for all.
Human rights of children in the social care system is the subject of today’s hearing. Visitors who are here in the public gallery, viewers online and our panellists are all very welcome. Today, we are going to hear from Anna Bird and Caroline Coady and, in the second session, Alex Ruck Keene KC, Professor Alison Young and Connor Johnston. This is the second oral evidence session in this inquiry. Its purpose is to consider the extent to which the human rights of children in England are protected in the social care system. Today’s session focuses on the effectiveness of human rights protections in the disabled children’s social care framework, including discussions on the definition of disability, the effectiveness of complaints mechanisms and proposals for change.
Turning to our first panel, we have Anna Bird, who is CEO of Contact, which provides advice, information and support to families with disabled children in the UK. Anna joined Contact as CEO in June of 2023. She is a leader in the not-for-profit sector, where she has campaigned on behalf of disabled people. We particularly admire the work that you have done.
Caroline Coady is deputy director of social care at the National Children’s Bureau, the NCB. That is an umbrella body for organisations working with children and young people in England and Northern Ireland. Caroline is an expert member of cross-sector working groups focused on safeguarding and child protection, which are extraordinarily important issues. She manages training and resource development for social work practitioners.
Let me ask the opening question as a curtain-raiser before my colleagues dig into the granular detail. How do disabled children experience the social care system differently and how does that impact on their human rights? Inter alia, only this morning I received an email from the Disabled Children’s Partnership and the Speech, Language and Communications Alliance, which I understand represents over 160 different charities. They have asked specifically what assessment has been made of Disabled Children’s Partnership and the alliance report on how to spend less and get better outcomes for children with speech and language challenges. As many of us who have worked in the sector will know, speech and language is a crucial issue in giving people access to so many other things. Inter alia, if you would not mind, could you perhaps answer that as well as the general?
Anna Bird: Let us start off with the basics. For disabled children, social care is incredibly important not just to keep them safe but to enable independence, choice, control and participation and, of course, other rights, such as a right to an education. For us at Contact, social care is consistently the third most popular call on our helpline, so we know that families struggle to get the support they need and find it very difficult to navigate the system.
We know that, at the moment, the system is a difficult system to navigate. Families experience unfair treatment quite consistently and are routinely held back from participating in a meaningful family life and everyday activities because of a lack of support available. We know that it is often true that families do not understand their rights. It is very opaque as a system. Professionals do not always understand their duties under the law. Families seeking help and support encounter thresholds that make it very difficult for them to get support, and support can often be denied or delayed.
I will give an example to bring this to life for the committee. I was talking to a parent this morning of a young disabled woman who has been seeking social care support. She has severe physical disabilities and learning disabilities. She is looking to move into her own accommodation. She has been going through the process of getting the right social care for the past three years. As a person she is unable on her own to manage her own personal care, prepare her food, keep herself safe and open a door on her own.
It took three years before the care workers actually had an assessment with her in the room, or spoke to her about what her needs were. There were some initial assessments that deemed her to have no care needs. That level of care would have killed her. During the process, the parents were routinely asking for her to be seen and assessed in person and for her to be involved and asked about what she would like to achieve in life, and none of that really came to fruition.
There were other real indignities in the process where her private data was shared with private companies. They were trying to find her a provider for her care needs without her consent. Her parents were not involved in meetings. Wrong or inaccurate information was provided on forms. Her name was wrong on forms. Her parents said to me that she had no dignity, right to privacy, self-determination or choice, control and participation. Ultimately, it was a complete failure of the system. Unfortunately, that kind of experience is not unique. Many families experience a really humiliating or difficult time trying to get the support they need.
Chair: Thank you for that opening statement.
Caroline Coady: In our experience at the Council for Disabled Children, which is part of the National Children’s Bureau, which I also lead as deputy director around our social care work, we completely agree with all the challenges that Anna has just set out there. That leads to families being catapulted into a more significant part of the system, when actually we could have avoided crisis at an earlier time through different types of intervention.
Where that can sometimes cause challenges, and in fact trauma, for families is that we end up in a situation where, through stigma and a lack of coherent, proportionate pathways for families to access support early, we end up in a situation where that lack of support leads them into crisis. They then present to social care services in a different context than they would have done when they were asking for support to continue in their caring roles. Sometimes that can lead to children jumping straight from just being known to community settings or supports into becoming children looked after.
That is not always in the best interests of children and their families. That can mean, in terms of rights to family life and also some of the rights and protections around liberty and security, that we end up with children and young people placed a long way from their homes, which makes it difficult for families to maintain contact and bring those protective factors. That can increase some of the risks that those children and young people are exposed to
Chair: Are those representations that have been made to me today about the specific issue around speech and language an issue for disabled children?
Anna Bird: It absolutely is. In another capacity I am chair of the Disabled Children’s Partnership. I do not know who sent you that email but I commend them. That report is really important because it demonstrates that early intervention on speech and language can save huge amounts of money for the system, so £8 billion. Also, it makes a huge difference because, of course, if children do not have their speech and language needs met, they cannot communicate. They do not have the ability to participate fully, so it really has an impact. We absolutely see that early intervention is critical in that particular case.
Chair: I should say, though it is not a material interest, that my retired wife was a speech and language specialist working with people with special needs, so it is a subject close to my heart anyway.
Q27 Sir Desmond Swayne: The Law Commission requests a single comprehensive piece of statutory guidance for social care law as it affects children. It goes on to suggest that that should also include guidance to tackle the perceived overreliance on safeguarding children from harm to the detriment of the provision of appropriate support for children, parents and others. Is that fair? Is the system seeking to protect children who really need help?
Caroline Coady: There are some real imbalances in the system and the way that the legal framework is set up, and rightly so in some respects, in order to safeguard children and protect them from harm. Sometimes the system has tipped slightly too far into that space because of the broader needs for support of disabled children and their families. That can mean that sometimes we take a very risk-averse lens to early assessments of disabled children and their families, which can make that challenging.
In the context of a piece of statutory guidance, at the moment the duties and requirements around all those things are across a number of different pieces of statutory guidance, including Working Together to Safeguard Children, which is probably seen as a kind of safeguarding and child protection piece of statutory guidance. We also have the SEND code of practice, which has a number of duties and approaches in it. We have the Families First Partnership guide that is there at the moment. There is a real patchwork of different approaches and mechanisms, all setting out interdependent parts of the same system that are leading to a really challenging and fragmented experience of that approach for families.
Chair: I know that Dr Swallow also wants to pursue that point and has the next question around the Law Commission, so let us move on.
Q28 Peter Swallow: As Sir Desmond has already mentioned, the Law Commission made this recommendation for a comprehensive piece of statutory guidance. Picking up directly on your answer there, is it your view that we need an extra piece of guidance or that what we in fact need is a review of the existing guidance and perhaps bringing it together into one piece of guidance? If that is the case, how will that protect disabled children’s human rights? What, in particular, would you like to see included in that guidance?
Caroline Coady: We very much need a bespoke piece of statutory guidance that brings everything together around the pathway for disabled children and young people and helps practitioners working across the different parts of the system who need to come together for this group of children to understand both their own roles within that pathway and the roles of other practitioners and colleagues who might be working with those families. That needs to include anything right through from pathways to short breaks for disabled children and their families to thinking about some of the recent announcements around SEND practitioners in family hubs, thinking about how we bring together what a family help system looks like, the role of family help lead practitioners in the context of disabled children and young people and, really critically, bringing in some of the Care Act duties around transition assessment as young people move into adulthood, which are really poorly implemented at the moment at a national level.
It is really important to bring that journey together. That being said, those other pieces of statutory guidance have critical roles in the wider social care system. That is also a social care system that has to be there for all children, so therefore I would not necessarily advocate for removing reference to disabled children in those other pieces of guidance, but there needs to be a clear pathway that is set out in one place for disabled children and young people.
Anna Bird: Can I make a general point about the Law Commission’s recommendations? The Law Commission did a really excellent job of consulting right across the sector and considering what needed to change. In many ways, we now know what the solutions are. The sector is largely, and across the board, in support of what the Law Commission has recommended. We would like to see those recommendations being enacted, because they will make a huge difference. We know that there are serious problems in the system and this is what needs to change. We all support, and contributed fully to, the Law Commission’s recommendations, which genuinely were co-produced and involved families and users of social care services very fully.
Chair: Getting a timetable for enactment is really crucial.
Anna Bird: It is really important for us, yes.
Q29 Tom Gordon: Building on that, one thing that we have heard and seen so far, and I know from being a councillor in two different local authorities previously, is that there are no national eligibility criteria for the provision of support to disabled children. That means that you end up with this sporadic patchwork of social care provision, depending on the local authority, at a time when local authority budgets are under pressure. I wondered to what extent that raises human rights concerns for you. If we were to recommend criteria for national eligibility for disabled children in social care, what would they look like?
Anna Bird: We absolutely see a postcode lottery. That definitely exists and children with identical needs might have different levels of support depending on where they live, and also in time. The same child with the same needs might be offered a lower level of support because the funding is pulled over time.
That is a concern, but there is also a concern that the eligibility criteria are completely opaque. Councils rarely publish their criteria. It makes it very difficult for families to understand their rights or how to challenge any decision that is made.
We have heard a lot of stories. There are lots of families that call our helpline who have had a half-hour conversation with a social worker that has turned out to be the social care assessment, and they did not know they were being assessed, or where the social worker has been really encouraging them not to go for an assessment. The Disabled Children’s Partnership’s research from 2023 showed that one in four families were told that they did not meet the threshold when they had a disabled child, so they absolutely, under the child in need eligibility, have a right to be assessed.
Caroline Coady: To build on that, one added complication in this space is that we have a number of overlapping duties in relation to thresholds for provision and thresholds for assessment and eligibility, and how those things fit together. That is often not well understood by front-line practitioners either. That means that sometimes eligibility criteria that exist in local areas are being misapplied or applied differently to different groups of children and young people. Sometimes there is a conflation between the threshold for assessment and the threshold for provision. That links to duties that are in the Chronically Sick and Disabled Persons Act 1970 and duties and powers that are in the Children Act around those provisions. Often there is some confusion by practitioners in terms of under which piece of legislation they are making provision.
Tom Gordon: We talk about a postcode lottery. One thing that is very topical, and we have seen it in North Yorkshire, is local government reorganisation. Do you have any concerns about how that is impacting on the children’s social care system?
Caroline Coady: The breadth of change that is happening across this space at the moment, and the different timelines for different implementation pathways and things, will inevitably continue to have huge impacts on this. That is one reason why we are saying that having a clear pathway that looks at how those things come together is important.
In terms of the local government reorganisation and some of those things, a number of areas will be coming together and will already have misaligned systems. They will have different types of services and different types of integration, and they potentially have different eligibility criteria already. As that starts to come together, that is going to become even more confusing for families. Having a set approach to that that gives us that national standard and consistency will become really important.
Chair: That all makes sense, but Mr Gordon was asking what these national eligibility criteria would look like. Who is working on that at the moment? Can you provide this committee with something that we can look at ourselves on what it would look like so we can maybe make a recommendation to that effect?
Caroline Coady: Some of the work that the Council for Disabled Children has done has focused on needs-led eligibility. We worked with 13 local authorities a few years ago to design what a framework for that looks like. One of the critical things within that for me is that this is about impact on life and needs for children, young people and families, as opposed to diagnosis-led models and thresholds. There is something about how we ask the question and what happens if we do nothing, which talks to the example that Anna was sharing earlier on in her response.
Chair: If you can share that with us in writing afterwards, that would be really helpful to the inquiry.
Q30 Alex Sobel: One thing that we are particularly concerned with as the Joint Committee on Human Rights is the provision and application of the European Convention on Human Rights. I am going to ask about Article 8, which is the protection of the right to family and private life, which is a qualified right, and how it is applied when taking children into care, for instance in terms of separation of siblings and other issues that might have an impact. Are there concerns in the disabled children’s care framework in relation to Article 8 rights for disabled children?
Anna Bird: I can give a broad answer about the right to family life. Families tell us that trying to get social care can be a relentless battle and erodes the ability to enjoy family life. As a parent, you have to be a lawyer, an advocate, a warrior, a carer and an educator often. You have very little time to just be Mum or Dad, so that is certainly true.
We know that it has a profound effect on siblings. It can affect relationships and physical and mental health. There is this endless battle to try to get the right support. We are seeing sometimes that, with children with the most life-threatening conditions, support is denied by the NHS or there is a battle between the NHS and social care. That can have a profound impact on a family too.
We see—I am sure that Caroline will want to say more about this—that families are often only offered social care at the point when there is a real risk of family breakdown. Sometimes, when they ask for help, they fear that their children will be taken away, rather than care provided. Families are often viewed with suspicion, rather than as needing support. I do not know whether you want to say a bit more about that, Caroline.
Caroline Coady: Building on what Anna said, there are also some real challenges about how we identify at an earlier point in time where there are opportunities to support siblings, so thinking about whether we identify siblings of disabled children as young carers in a timely way. Do we understand how we meet those needs and support that to happen? We also need to think about some of the provision that can be put in place for families to do things together as a family, as opposed to separating from each other.
You specifically asked about when children become looked after and the focus on sibling separation and things like that. That can be particularly challenging for this cohort of young people when we are thinking about residential special schools and things like that. As I mentioned earlier, because of the sufficiency and the type of therapeutic care that might be needed for some of the more complex young people who need that type of support, they are often placed a long way from their home. It is not just siblings, but it is also their broader family networks.
Chair: Often things will come down to awareness by professionals who are working with disabled people and their children. I know that Lord Sewell has a question for you about what training is in place, so let us hear from him.
Q31 Lord Sewell of Sanderstead: This is on human rights training. Is human rights training available to people involved in decisions or those who provide support within the disabled children’s social care system? If so, does it result in decisions being taken with human rights considerations in mind?
Anna Bird: Contact contributed, along with families, parent-carer forums and lots of other sector voices, to the development of the Oliver McGowan training for health and social care staff, which embeds human rights principles into training around how to support autistic and learning-disabled children. That training is mandatory for all health and social care staff. There is a requirement that human-rights-principle-led training is provided.
We can see that the rollout of that training in children’s social care lags behind adults and other areas. We have seen that, where there is a requirement to provide mandatory safeguarding training, that will trump any requirement to provide disability or human rights training. That is a concern, because it means these principles are not being executed.
Caroline Coady: As Anna said, we have other areas of mandatory training that might take precedence over disability training, but we also have a wide range of different teams responsible for different parts of this system that do not come together collectively in terms of having clear professional development and thinking about what that looks like. We often end up with very siloed responsibilities and pockets of practice that do not come together around a coherent workforce development programme that embeds human rights training.
Lord Sewell of Sanderstead: It is almost like the local authority is the carer in some cases. There is that idea that people inside that authority know about human rights law and have that kind of knowledge. Do you think that that is there? Could it be improved?
Caroline Coady: It can definitely be improved. It will be there in some of those teams and places, but it is about how we create that at all tiers of a local authority, so leadership, decision-making and front-line practice.
Anna Bird: The evidence from the families we speak to would suggest that, in practice, there is no evidence. Often, children are not being invited to participate in the conversations about their needs. Families are denied a voice. There is enough evidence to say that there must be an improvement in the understanding of fundamental human rights principles across local authority support.
Chair: That may be one of the recommendations that we would like to consider as an inquiry. If you have more that you want to say to us on that and what it might look like, please feel free to write to us to add to that answer.
Anna Bird: I am very happy to do so.
Q32 Juliet Campbell: You have spoken a little bit about failures in the system to recognise and respect the dignity of families and family life of disabled children and their families, carers and parents. Thinking about that, do you think that disabled children and their parents have effective means to raise complaints and receive remedies?
Anna Bird: The means of redress exist in principle, but it can take a long time and be very difficult for parents to get any access to justice. We know that the complaints process can be quite arduous and take a long time. We have spoken to families who have had to go three times round the complaints loop before getting an assessment even. It can take a huge amount of time and effort to get through that process, only to get to the ombudsman, which does not take that many cases forward. Ultimately, the backstop is judicial review, which is a costly and very difficult process for a parent to have to go through. We think that the routes of redress are too hard to navigate and too timely and expensive for families.
In terms of access to justice, the very basic first step we need, which I think we have covered a little bit, is to make sure that the framework is clear, accessible and understood, so that the routes to redress are genuinely a backstop, rather than the route to getting support. The first thing to get right is the eligibility threshold and the right to assessment.
Once we have that system in place, there is a question about what kind of route to redress is the most accessible. We know that, in the education space, the SEND tribunal is more accessible. In principle, it is cost-neutral and you do not need a lawyer to go through it. There are other examples of more accessible routes to redress than the social care system offers.
Juliet Campbell: When you talked about the eligibility threshold, how do you think that that would look?
Anna Bird: We support the Law Commission’s recommendation in terms of the duty to assess if there is good evidence that the child has a disability and is in need of support. That is the recommendation it is making. Broadly, we support that.
Then the national eligibility criteria need to be available. If those things are transparent and nationally consistent, that will go a long way to helping parents to navigate the system and understand their rights and practitioners to understand their duties. That, for us, is the first step in getting access to a fair system, but clearly we need those backstops as well.
Chair: We would not be having this inquiry at the moment if it were not for my colleague Baroness Lawrence, who was very keen that we should look at the position of children in social care. Looking now to the future for proposals for change, I would like to ask Baroness Lawrence to have the last word in this particular section of our inquiry.
Q33 Baroness Lawrence of Clarendon: Do you have any further human rights concerns related to the disabled children’s social care system in England that you would like us to flag? Are there any recommendations you would wish us to take forward if we can?
Caroline Coady: As Anna said, at the Council for Disabled Children we very much agree with the recommendations from the Law Commission review. We would be keen to see as many of those as possible moved forward by the Government. Some of the particular areas that perhaps are not in the scope of that review that are critical in this space are around young people who are deprived of their liberty. That is a particular challenge for young people as they are transitioning into adulthood, where we come into the area of the Mental Capacity Act and thinking about what that looks like and the reach-down transition duties from the Care Act.
We need to think about how we make sure that, for example, the work that is recommended to move forward on the liberty protection safeguards has this group of children in mind and thinks about what that looks like for 16 and 17 year-olds within those recommendations, but also how that links to things, for example, such as the measures within the Children’s Wellbeing and Schools Bill around relevant accommodation for young people at the complex end of this system. It would also be really interesting to understand what the Law Commission’s views are of the extent to which those measures might respond to some of the recommendations that it has made.
Anna Bird: There is a point that we have not made, which is less about the legal framework but about the sufficiency of support. We know that, for many children, the packages of care are too small to allow children to engage in everyday activities, go to playgrounds and engage in clubs and after-school activities.
We had a mum who spoke to us who was offered a short break, which was actually the cost of swimming lessons, but the package did not support her transport costs to get to the swimming pool or the carer to support her child in the pool, so actually it was not a break and not really an activity for the child either. It was impossible for them to continue with that. We also need to be thinking about whether the support available, which goes beyond the framework into investment in social care, is denying children everyday activities and a right to participate in things that other children take for granted.
I think that I have said it already, but we think that reform is urgent. This system and the legal framework is so outdated. Some of the language is really quite offensive. We need to update and modernise the framework. The work has been done to identify what those changes need to be. The Law Commission has done that very well. We really want is to see those recommendations be adopted by Government. Any pressure we can put on Government to make some headway would be fantastic.
Chair: You have certainly been doing that today.
Baroness Lawrence of Clarendon: One thing that has become quite clear is the opportunity for the parents’ and children’s voices to be heard. Their voices seem to be somewhere down the bottom here and nobody is listening to them. It is like when you think about when things go wrong in hospitals. It is because the parents’ voices are not listened to. How do we make sure the voices come across to authorities or whoever to make sure those are listened to? That is where the changes could happen.
Caroline Coady: Linked to that point, we see similar examples, so in the work that the Council for Disabled Children did with the national safeguarding panel around residential settings for safeguarding disabled children. A number of the recommendations from that were around more effective commissioning. A number of the challenges around that were linked to lack of listening to children and young people’s voices in terms of what they were experiencing in those settings. Some of the recommendations from that review need to be taken forward urgently. We know that there has been some progress made but not enough. A clear timeline of how that is going to be implemented will be important.
I have a final point in terms of systems level and workforce and the fact that we have talked about all those agencies that really need to come together to support disabled children and young people to thrive. We know that there is a lot of evidence in the sector around the designated clinical and medical officer roles and the designated social care officer for SEND roles. There are recommendations about making those statutory. That would be a really important recommendation from the inquiry around bringing some of that forward.
Q34 Chair: Thank you for the clarity and passion with which you have expressed those views to us this afternoon. We have been indebted to you. Is there anything you want to add before we conclude the session? Do you have any last thoughts? You have been succinct in the evidence you have given us.
Caroline Coady: There is nothing in particular from me.
Chair: In that case, on behalf of the committee, let me thank you for being with us this afternoon. There are some things you have said you will follow up with in writing to us. Feel free to add to those if you think we can give greater clarity or sharpness to the recommendations that we will make when we conclude our inquiry. Thank you again for being here.
