Better SEND support for Black and mixed heritage children and families

Images do not depict the families involved

In 2022 we commissioned Global Black Maternal Health to lead a research project to better understand the experiences of Black and mixed heritage children and families when a child has special educational needs or disabilities (SEND).

Despite more frequently being identified as having SEND, Black children in England are less likely to receive adequate support for their needs. We’ve heard from local families, discussed with community partners, and seen in previous research about the challenges and discrimination many Black families face when trying to access support for a child’s mental health. Parents talked about this in our 2021 family ethnography, and in the report we commissioned in 2023 with Centre for mental health. We wanted to understand more specifically how this racism plays out in the context of SEND and gather the insights of Black families and professionals – something that hasn’t been explored in depth before.

The two main questions asked by the research team at Global Black Maternal Health throughout this 18 month quantitative and qualitative research have been:

• How do families of Black children with SEND obtain appropriate support for their children?
• What is the impact of this experience on Black children and their parents?

The research team conducted a survey of 46 parents/carers in South London, each with a Black or mixed heritage child or children aged 5-11 receiving formal support for SEND.

Semi-structured interviews were held with some of the parents and carers, as well as healthcare, education, and mental health professionals to hear more about their experiences and the experiences of those they work with.

Despite the professionals who were interviewed being from different fields – health and social care, mental health support, education – there was a remarkable degree of consistency in their insights. As with the experiences shared by parents, there were strongly recurring themes in the conversations with professionals who support Black and mixed heritage children with SEND.

Parents understanding of SEND plays a big role in the support a child receives

Though professionals talked about a lack of understanding around SEND in the general population, many described this as being particularly evident within Black communities. In some cases, professionals talked about how parents are better able to understand needs that can be seen:

“…a lot of times you will tend to find that within the Black community, there is a lot of lack of education around SEND needs. Only when it’s visible then they’ll be like ‘ohh OK’. You might have cerebral palsy, but anything that’s not visible. They dismiss it.” [Professional]

“Behaviour problems like ADHD, you know for some it’s like ‘No, there’s nothing wrong, he’s naughty…he needs discipline’. So, do you know what? They will send them to the Caribbean or to Africa for the summer…Because there they say ‘it’s more strict, the teachers here are not doing what they need to do’.” [Professional]

“Some parents don’t even know what autism is. You know, they just think this is how their child is. Their child can’t sit still. Their child don’t like change. Their child don’t like certain things. And they just kind of leave it to the school to manage with.” [Professional]

Parents’ religion, faith, and cultural views around SEND were also described as factors that moderate the process of accessing support. Professionals reported how some parents call upon their religion and faith, relying on prayer as a way to ‘correct’ their child.

The process of accessing SEND support could sometimes be affected by parents whose faith takes precedence over standard therapeutic interventions. One professional explained that some families will get ‘offended’ if support groups are offered, believing instead that ‘prayer is gonna do the magic’. When asked how to support parents who rely on their religious views during these times, one professional stated that the key to reaching common ground is to explain that their own beliefs and professionals’ views on their child’s needs can co-exist.

“What we’ve found is a lot of our Caribbean and West African community…we find that sometimes the acceptance of the diagnosis is a real issue. So, religion is very heavily tied to the diagnosis and sort of praying things away and believing that, you know, that they can be fixed.” [Professional]

“…you’ve got religious backgrounds who believe that, no, we’re just gonna go pray. I use my own personal experience to say I’m a Christian too and I got family that are Muslims…It’s not about religion, it’s about the child.” [Professional]

Negative experiences with services and ‘a massive mistrust’ was felt to influence how likely parents would be to engage in the SEND provision process, with one professional explaining that many parents from marginalised communities are ‘very anti-establishment unless they see someone they can relate to.’ Some parents’ past experiences had led them to be particularly fearful of external agencies being alerted in relation to their child’s potential need, choosing to distance themselves from education providers to avoid further contact from other agencies.

“So that family in particular, they’ve had past involvement from social care. So, there was a lot of fear, I think, that her children were gonna be taken away, even though that wasn’t the case.” [Professional]

“So, I’d call the parents up and say, ‘[child’s name] wants to come to this. Is that possible?’ And they’ll just say ‘No. No, I don’t want to do that’… One parent who’s quite popular, she said that some of them are scared that my organisation is associated with social services. And that’s what they see me as.” [Professional]

“It’s really hard because…within the community that we’re talking about, I think there’s a lack of trust with external agencies, often professionals not coming from backgrounds similar to them or being quite you know, technical in the language they use.” [Professional]

Professionals talked about how different the process is when a parent is fully aware of their rights and willing to navigate the system, though also acknowledged the huge burden this places on the parent.

“It’s a full-time job, and I meet parents with folders that are this big as if they’re barristers, and at the end of it I say, ‘well, you should have just done a law degree because in essence you’ve had to become a lawyer to navigate SEND’.” [Professional]

And some shared that they have watched parents try to navigate the system, then pull back when they had a very negative experience.

“…if a parent doesn’t believe that they can advocate strongly enough for their children, and they’ve had an experience where maybe they’ve gone into panels… and they’re faced with all these professionals and they don’t know how to deal with that situation, they kind of shut off because they don’t wanna go through those experiences anymore.” [Professional]

Denial and shame affect the way families respond to SEND

As well as a lack of understanding, professionals also talked about the roles that denial and shame play in the way parents respond when a child has SEND. They described how parents often felt that they had in some way been the cause of their child’s needs. Feeling that they had ‘done something wrong’ during pregnancy or that their parenting was being scrutinised, a number of professionals talked about the guilt expressed by parents living with a child with SEND and how they can ‘feel like they’re judged’.

“This child went to a nursery. They identified speech and language needs and I think what they were trying to identify is likelihood of autism. Mum shut it down, she said, ‘He’s young, he’ll start speaking soon’. And then the child came to our school and I had a good relationship with her and I spoke to her about it and she said ‘no, no, no, let’s just wait. Let’s just wait’.” [Professional]

“I love my people, but some Black people they’re embarrassed to feel that their child’s got something. Yeah, so they start to play things down.” [Professional]

“I think it all comes down to… having a SEND child and through cultural learnings as in, ‘is there something wrong with my child now? Who is to blame for this? Is there a cure?’” [Professional]

Parents not wanting their child to get a diagnosis because of the shame and stigma of being ‘labelled’ was raised by a number of professionals. Concerns about how their child would be viewed by others was a common worry and professionals talked about how parents’ fear of labelling could negatively impact children’s access to SEND support.

“…there are the parents that just don’t want their children to be labelled because they have this idea of what it means for a child to be labelled from maybe back in the 80s or the 70s…Having that label would get the additional support it would give them access to resources and professionals. They don’t see that. Instead, they see that their child is gonna be labelled, their child is gonna be treated differently.” [Professional]

“I mean, I’m half Ghanian and I do see that a lot more with African parents that it’s an issue. I guess it’s that stigma thinking ‘Oh, your child’s special needs’” [Professional]

“I think culturally as a people, we have to educate ourselves to SEND. It exists and it’s in our community. It’s not something to be ashamed of…if we do need our children to be assessed, we need to be open to having those assessments. But sometimes we don’t, and I get that resistance…I understand the inequalities that are there, but I also think, and I say this respectfully, we shouldn’t allow our level of ignorance to stop our children accessing services.” [Professional]

Many professionals shared their experiences of witnessing discriminatory attitudes and behaviour towards families, attributing this behaviour to professionals who had failed to take the time to understand a family’s personal circumstances or consider their cultural values.

“Sometimes professionals who don’t share the same kind of cultural identity, they don’t get it. I’ve got into many kind of confrontations with colleagues because of how judgmental they are about parents and their approaches to things, the way they parent, and you know it really gets my back up because instead of being supportive and focusing on the positive, it’s like just wanting to shame the parent…you don’t know what trauma they’ve experienced, their past relationships with education. You know, there’s a lot more. There’s a wider context than people think.” [Professional]

“You know, when you’re in meetings and people are like ‘I don’t want to take on a child because their parent is difficult’ and it’s not a difficult parent, it’s just an ethnic parent being as expressive as a white parent” [Professional]

“Something really important to know, and this really, really infuriates me, is that dependent on who the parent is and the level of understanding and their confidence and ability to hold the school accountable, they do things they can get away with…nothing that they can get in trouble for, but you know, efforts won’t be made…the support is for which parents they think are gonna bother.” [Professional]

Just as the parents interviewed described family and friends misinterpreting their child’s needs as bad behaviour, the professionals also explained that some parents and service providers mistakenly view children with SEND as ‘naughty’.

“With the Black parents who have not been so willing to accept that their child has ADHD, it has been that, ‘No, it’s just a behavioural issue’. But again, that’s been reinforced to them by schools. And now they’re excluded, and I’m saying ‘your child has been excluded because their needs are not being met because they have a special educational need’. And it’s like, ‘no, we don’t have those things’” [Professional]

“…autism does not look the same for a white child as it does for a Black child. I’ve had Black boys being excluded for being disruptive because they were stimming by beatboxing to regulate themselves, and it’s been noted by teachers that they have been spitting at other people and aggressively banging.” [Professional]

“I do have it with teachers and a lot of the times it can be quite uncomfortable for them because automatically it’s about, ‘oh, I’m not a racist teacher’ and we have to be open to talk about the inequalities, particularly within SEND… because I’ve been in those rooms where I’ve spoken to many of those teachers and I’ve actually gone and said, ‘look, I’m a Black professional here and this is a Black child’ and the language you’re using for this child where there’s an undiagnosed need is not conducive to them – it’s not, when you’re using terminology like aggressive.” [Professional]

One of the interviewees talked about her mission to educate the other professionals around her about SEND, particularly in schools.

“So, I’ve worked a lot around SEND with my teachers, giving them training, how to spot how to identify if you think there’s a need because sometimes it’s not being able to regulate your emotions. They just need help to know appropriate strategies to use if they get angry…And it could be something as simple as learn to walk away. But you’ve got teachers that walk into the classroom, a student is not happy and you’re forcing them to do what you’re going to do or you’re going to get a detention…And it escalates when, if you just gave the student 5 minutes, they will just calm down and they will cooperate.” [Professional]

It’s important to build engagement and trust with parents

As reported in the parent interviews, building a trusting relationship with parents – especially those who have had negative experiences with services and who have limited understanding of the benefits of a diagnosis or support for their child – was viewed as crucial for initiating and maintaining parental engagement. Professionals noted that some parents will even ask for ‘specific members of staff that they trust’.

“I had to build a relationship with the parent, and in order for her to gain my trust, I supported her with other things, so applications for her younger son to nursery supporting during COVID… it took a long time and mum finally agreed to a CAMHS assessment.” [Professional]

Some interviewees talked about the process of building a relationship as more straightforward when the professional and family had a common cultural identity, enabling the parent to better relate to and more freely open up to the professional.

“In the school I was in it was predominantly white. There was three Black members of staff and the families of the Black and ethnic children would go specifically to the Black staff because they trusted them, I guess. So, one of them…she was pastoral support and honestly, I think that school would fall apart if she wasn’t there because the families loved and trusted her so yeah, I do think if you can relate to someone, you’re probably more likely to listen to what they have to say about your kid.”[Professional]

“I think representation is very, very important. And that is the reason why, when I work with a lot of these Black boys, I want them to see that you’ve got a man from the ends. That actually you can be something, that you don’t have to be pigeonholed.” [Professional]

Some professionals described signposting parents to additional support or organisations that could help, while others had been involved more practically. One professional explained how, when she attends parents’ meetings she does so in a purely supportive capacity, being clear that she is not there to speak on their behalf but that instead, her role is ‘making sure that they understand and that all the right questions are being asked’. Another professional described how she felt that making the school aware that she was supporting a particular parent had encouraged them to be less combative in their interactions with the parent.

“Mum’s been visited and being threatened with going to court, etcetera, etcetera. And then I stepped in and sort of said legally this is what the law says and this is what you need to follow through first and then at this point in time, the school’s realised that she’s got somebody who understands what should be done and they kind of backed off a little bit.” [Professional]

Better SEND support for Black and mixed heritage children and families is critical

Late or no SEND support was seen to be ‘catastrophic’, leading to negative attitudes towards school and behaviour in the classroom because of problems learning how to communicate ideas, thoughts and feelings. Longer term professionals noted that appropriate support would allow children to fulfill their potential into adulthood.

“…it can impact those children and their mental health as they go through into adulthood. They’re frustrated because they can’t talk or they can’t socialise… And actually some of those children, they become school refusers…they are not ready to sit down in a classroom because they are actually, they’ve been failed.” [Professional]

“Having that support earlier on helps those children be able to manage and regulate their behaviour. It also addresses the needs that helps them to be able to access education and curriculum in a way that’s more positive, so it keeps them in school. It keeps them engaged; it allows them to get the qualifications to be able to move on successfully.” [Professional]

“Both of our Black boys who are in pupil referral units, you go through their case file and there’s a level of SEND that started when they were young… I always go and say, why were they not assessed when they were young? What stopped them from being assessed? Sometimes it’s parents’ resistance but other times the parents were asking and asking.” [Professional]

It’s important to note that all professionals were forthright about the challenges of accessing SEND support, feeling strongly that economic, systemic, and organisational issues were key drivers behind the difficulties experienced by both professionals and parents.

The majority of professionals expressed frustration at the bureaucracy of the SEND system and at how unnecessarily complex and obstructive the process could be. As experienced by the parents who were interviewed, there was also exasperation from professionals at the lack of joined-up working between agencies both at a department and individual level; poor communication often led to the compartmentalisation of responsibility which, in turn, resulted in support not being accessed in a timely manner. Constraints on resources were felt to be the main contributor to the extensive wait times which could be over a year long.

Global Black Maternal Health and Centre for Mental Health have responded to the insights from the research by designing a prototype Special Educational Needs and Disabilities Advice Bureau (SENDAB) in South London.

The team wants to offer culturally intelligent, specialised support to local Black families, empowering parents and improving children’s outcomes.

The evaluation of the prototype will look to build the evidence base around what needs to change for families to ensure children can access the support they need and are entitled to. The integration of these findings into the mainstream SEND system will be a crucial component to success in the future.