How Families are Failed by Health, Education and Social Services

Context

Newbold Hope works with parents and professionals to reduce violent and challenging behaviour in children with a disability or an additional need. As part of this work we also run an online digital community on Facebook with nearly 10,000 mostly UK-based family members. It’s called Newbold Hope – Support Group for Families and the eligibility criteria to join this group are as follows: -

1. We generally only accept parents into the group, although sometimes we also accept close family members who are involved in the child’s care.

2. Each member must have a child aged between 3 and 18 years old on joining.

3. The child must have a diagnosed disability, an additional need, or a life-long condition. If not, they must already be on the pathway towards diagnostic assessment.

4. The child must demonstrate behaviour which is physically violent towards other people, who may be their parents, other family members, classmates, or others.

In January 2022, we asked this group of parents to tell us what their biggest, current concerns are about the services that support their children. 162 parents took part, sharing their thoughts, experiences, and insights, and some of their comments are included in this this report. The prevalence of violent and challenging behaviour has historically been significantly underacknowledged by Public Sector Services. There is also very little research that has been carried out to better understand the prevalence of this violent and challenging behaviour. However, two studies during the past 10 years have indicated that around 50% of certain groups of children and adults with a disability or an additional need may develop some aggressive behaviours. It is important to note that it is not the disability or the additional need which causes this aggression; any difficult or dangerous behaviour is nearly always anxiety-led, and it is the anxiety which should be addressed, not the primary diagnosis.

Here are the links to both pieces of research –

G. Crotty, O. Doody, R. Lyons, (2014) "Identifying the prevalence of aggressive behaviour reported by Registered Intellectual Disability Nurses in residential intellectual disability services: an Irish perspective https://www.emerald.com/insight/content/doi/10.1108/AMHID-03-2013-0016/full/html

Physical aggression in children and adolescents with autism spectrum disorders. Micah O Mazurek, Stephen M Kanne, Ericka L Wodka. (2014) Thompson Centre, University of Missouri https://link.springer.com/article/10.1007%2Fs10803-010-1118-4

What this means

Based on these two research studies, a conservative estimate of the number of UK-based families who have a SEND child with this sort of extreme behaviour at any given time is likely to exceed 250,000. Without help, support and intervention, these children are already on a trajectory which is very likely to lead directly to the criminal justice system by the time they reach adolescence or adulthood. Yet there are not enough services available to meet more than a very small fraction of this need. This is for two reasons: -

(1) The scale of this issue has been poorly understood by successive Governments so sufficient robust and responsive services haven’t been developed.

(2) Training has not been provided to equip the workforce with the skills, strategies and understanding they so badly need if they are able to support this group of families to reduce their children’s levels of violence in intensity, frequency, and duration.

Twenty-two common themes from parents’ comments

There are many recurrent themes expressed several times over in their comments. These include serious concerns about: -

1. The lack of training in this issue, leading to a lack of understanding about anxiety-led behaviour among staff throughout Health, Social Services and Education.

2. How this leads to Parent Blaming, when assumptions are wrongly made that behaviour must be due to poor-parenting skills, and it must be the parent’s (usually the mother’s) fault.

3. Parents felt they were not being listened to or believed.

4. The Social Services Assessment Process being geared towards scrutiny – with what seems like a primary agenda to identify any safeguarding or child protection issues. The focus is solely on the child, not on the whole family. This model is not conducive with supporting families appropriately and with compassion.

5. The lack of compassion shown to families – parents and children alike – when there is difficult and dangerous behaviour.

6. There is very little understanding among professionals, particularly in schools, that these anxiety-led behaviours are caused by a child feeling so distressed, anxious, frightened, threatened, and confused that their behaviour is very often self-protective, and that they are also communicating that they don’t feel safe. By the time a child is behaving aggressively, they have moved into a state of “fight and flight”, and they are acting instinctively. They are not “choosing” to behave like this.

7. The national lack of appropriate school places for SEND children who cannot manage in mainstream settings, particularly for the cohort of these children who are academically very bright. And how this means that there are several thousand children no longer able to attend school because they don’t have a school place.

8. Having a several years-long wait for assessment appointments in many areas of the country.

9. The lack of support in school that is offered until a child is diagnosed – and the damage this can do to a child’s mental health.

10. Gatekeeping: parents are repeatedly refused access to support for their children, particularly when behaviours happen at home rather than at school.

11. The lack of understanding about emotionally based school attendance difficulties.

12. The fear of the child’s violent and challenging behaviour being misunderstood by Social Services, which can lead to Child Protection Plans or children being removed instead of getting the help, support and intervention that could strengthen a family and help to move the child beyond their extreme behaviour episodes.

13. Having children removed or being accused of Fabricated and Induced Illness. Indeed, some participants shared that this had already happened to their families.

14. Schools setting children up to fail by taking a traditional behaviour management approach instead of trying to understand what causes the behaviours and then address them from a more compassionate perspective.

15. The lack of understanding among professionals about those children who hold it all together all day long at school and successfully “mask” in the classroom, bottling up all their unexpressed emotions to come home and explode once they feel safe again with their family. Many parents can see that the behaviours which emerge at home at the end of the school day are caused by things that happen at school. When schools don’t acknowledge this link or don’t work with parents in collaboration to minimise this chain reaction, families feel alone, powerless and abandoned. Many school staff regard a child who is quiet and compliant in class as being “fine in school” whereas they may in fact be masking very successfully and holding it all in until they get home. In the group there are regular discussions about children who lash out at family members or who damage property and possessions when they arrive home – this is a very common pattern of behaviour which doesn’t always get recognised by professionals working with this group of children. When it is recognised, there is often an assumption that the problem lies at home rather than at school, and parental competency unfairly comes under scrutiny instead.

This Video explains “masking” very well as “The Coke Bottle Effect - https://www.youtube.com/watch?v=F18FsiPMFhc&t= .

16. The lack of trust in the systems and in many of the professionals involved comes through loud and clear again and again.

17. The constant fighting to get their children’s needs met.

18. Accountability – and how Local Authorities are seldom held accountable for their failings.

19. PDA – also known as Pathological Demand Avoidance – and how it’s not recognised or acknowledged by many professionals across all services, even though families are successfully using PDA-specific strategies at home that really help. This is a topic that regularly gets discussed within the group.

20. The exhaustion, the rage, the despair, the fears and the heartbreak these families experience. This was present in almost every comment that was shared.

21. The lack of help and support for teenage recreational drug use in SEND children and young people despite how vulnerable this makes them.

22. A disinterest among professionals, and an attitude that violent behaviours can’t be changed.

KEY MESSAGES

1. Parent-blame must stop.

During June 2021 we asked parents in the Support Group about whether they had ever felt blamed and judged by professional staff who work with their child. 1,364 parents took part, and 1,297 of them reported that they had felt blamed or judged. This is 95% of all those who took part.

A month later, in July 2021, Cerebra published a report called “Institutionalising parentblame” – here’s the link to it. https://cerebra.org.uk/wp-content/uploads/2021/07/FinalParent-Blame-Report-20-July-21-03.pdf

Parent blaming causes long-term and irreparable damage to a family at exactly the same time that they need a supportive and compassionate approach. Parenting is easier and more doable when people feel good about themselves. Parenting a child with extreme and violent behaviour is incredibly difficult, traumatic and at times, the violence at home can be terrifying. To blame this group of already very vulnerable adults can shatter their confidence, destroy their self-esteem, and cause a detrimental, long-term effect on their mental health and overall well-being. How can making a parent feel terrible about themselves help their child in any way whatsoever?

SEND parenting, particularly when there are additional severe behaviour issues, is hard work and exhausting. These parents are often assumed to be somehow responsible for their child’s behaviours, yet that isn’t the experience that Newbold Hope has had. On the contrary, this group of parents is generally very pro-active, involved, informed, hyper-alert and equipped with some very advanced parenting strategies that must be used to keep everybody safe. This group of parents are very often highly skilled and very knowledgeable indeed. Yet they are universally blamed, judged and shamed for their child’s behaviour instead of getting the help, support, understanding and kindness that they so badly deserve.

2. Families need better protection.

The way the current system is set up, there are no mechanisms in place to protect families from the actions of a violent child. Nor are they able to protect themselves from professionals’ accusations of child protection issues, safeguarding, neglect, and Fabricated and Induced illness. Parents in this situation are a particularly vulnerable group and the only advice they are given by schools, social services or CAMHS is to call the police. Most families don’t want to call the police out on their own child, and even if they do, police aren’t trained in these issues either so that the way they respond is variable. When parents understand that their child’s behaviour is being driven by anxiety, which is particularly prevalent in children who have a disability or an additional need, parents are very reluctant to call the police and risk criminalising their child for behaviours which are outside of their own
control, and which are disability related.

Anxiety-led violent and challenging behaviour is not exclusive to SEND children. Many children who have experienced trauma, adoption, foster-care, and many other groups are also vulnerable to developing these forms of behaviours. This means that there are probably  hundreds of thousands of parents who have nobody they can turn to and nobody who can advocate for them either. This group of parents is incredible. They are courageous, tenacious, determined, ever-learning and very knowledgeable. Their unshakeable love for their children comes through so clearly in almost all the comments. They deserve better than the lack of on-going support, follow-up care and lack of services that can help.

We have a Children’s Commissioner. Perhaps there is scope for a new role as Parent Commissioner or Family Commissioner as well? Someone who is primarily on the side of families and strives to strengthen them rather than to destroy them could significantly help to shift the pervasive parent-blame culture that runs through all our Public Sector Services.

3. School attendance difficulties needs a more understanding approach. 

Two related but different issues to highlight. Firstly, it is completely unacceptable that there are so many children unable to attend school due to the lack of appropriate specialist school places. This is particularly affecting more academically able students.

The second one is the issue of emotionally based school attendance difficulties, and how it is not taken seriously and how parents report the long-term damage that is done when schools prioritise attendance over and above mental health, and regularly drag children away from their parents kicking and screaming in extreme distress.

4. Better training in anxiety led behaviours for all staff and practitioners.

When a child’s behaviour is coming from a place of distress, confusion, fear and feeling threatened, traditional disciplinary methods such as sanctions or consequences simply will not work. These methods will risk increasing a child’s sense of not feeling safe, and they are more likely to escalate any behaviour than to eradicate it. When staff focus instead on trying to help a child regain their sense of feeling safe, using strategies that are grounded in kindness, curiosity, collaboration and understanding, much better long, and short-term outcomes can be achieved.

However, many staff are not aware of this. There is very little trauma-informed training about anxiety-led behaviour available for staff across all of our Public Sector Services. In many ways parents are often better informed and knowledgeable than the professionals who work with their children. Yet they are so often told that they are parenting wrongly and strongly advised to be firmer, stricter, harsher, and more authoritative with their child, even though these conventional disciplinary approaches escalate behaviour in children whose behaviour is caused by distress rather than misconduct.

Training in how to manage behaviour while also being able to offer compassionate and meaningful support to the child’s parents and siblings can transform lives and give this generation of SEND children a much happier and more hopeful future to look forward to.

5. Home-based violence is significantly underacknowledged across all services.

Historically, the issue of violent and challenging behaviour in SEND children has been underacknowledged and largely minimised and ignored. Could this
be because behaviour episodes are less likely to be documented if they happen at home?

Reading through the collective comments from parents, there are several recurrent themes that may explain why this this might be the case. In particular, the insights into parent/professional relationship breakdown, the lack of trust, the difficulties in getting schools to refer children to support services if the behaviour is home based, the blame, the not being listened to or believed, and the sense of parents battling in vain to get their children appropriate help. Are these multifactorial elements preventing home-based violence being taken seriously, or even believed? There is a strong sense coming through the comments that home-based violent behaviour is being minimised, disregarded, or even ignored completely and that when it is acknowledged, parents are held responsible for it. These behaviours are not
anyone’s fault. It isn’t a parenting issue and nor is it within the child’s own conscious control.

However, if home based violence is recognised much less, it’s essential to know how prevalent it is. While writing this report, I asked parents in the Family Support Group where their child’s violent episodes were more likely to occur. The results are very insightful. 

We asked parents the following questions –

Is your child predominantly violent at home? 777 people voted for this option

Is your child predominantly violent at school? 48 people voted for this option

Is your child violent both at home and at school? 181 people voted for this option

Is your child violent somewhere else that isn’t either home or school? 3 people voted for this option

This indicates that children are more than sixteen times more likely to be violent at home than at school. Including the figures of children who are violent both at home and at school, there are still four times as many children who are more likely to be violent at home. It is clear from the comments of parents that home-based episodes of violence are not being taken as seriously as episodes which are witnessed by professionals. It seems apparent that these home-based occurrences are not being reported and documented in the same way. This could well account for the widespread belief that this sort of SEND-related childhood violence is much less of a problem than it really is.

Home based violence ruins lives. It causes PTSD in the whole family; it causes relationship breakdown, and it destroys the lives of the brothers and sisters as well as the child themselves. These children, without the right help and support now, are likely to carry these levels of violence into adulthood with potentially catastrophic consequences. Yet parents are not being believed, or heard, and when they ask for help, they are blamed and judged. We must do this better.

Summary

The importance of acknowledging home-based violence in SEND children -

When we listen to the lived experiences of families living with a SEND child who also has violent and challenging behaviour, it is clear that violence at home seems to be much more common than anywhere else, including school. Yet families who endeavour to talk about the home-based violence that is happening regularly don’t feel heard or believed, and instead they get blamed and judged for their child’s behaviour. Furthermore, many report that professional staff aren’t interested in hearing about difficult behaviour that happens at home.

Pretending that home-based violence isn’t happening, or assuming that if it is it’s always a parent’s own fault, is not acceptable. Thousands of lives are being blighted, and entire families are living with a daily risk of serious injury or an even worse tragedy. Closing our eyes to this problem is not an option. By doing nothing, thousands of children will carry their violent behaviour into adulthood when it will be far harder to address. Our children and their families deserve much better than this.

The urgent need for training in anxiety-led behaviour for staff across all Public Sector Services -

There is very little training available to staff working across schools, CAMHS, other Healthcare and Social Services regarding anxiety-led behaviour in children with disabilities and additional needs. Without training, staff can’t be expected to understand underlying causes or offer practical solutions to support families facing these behaviour challenges every day.

Compassion and understanding can make all the difference -

What comes across from many of the contributors is how different things could be if there was more compassion and understanding from the professional staff tasked to support vulnerable families like this. Listening to a parent and believing what they say with kindness costs nothing, this is not entirely a funding issue.

Reasonable adjustments aren’t all about funding -

The most powerful reasonable adjustment someone can make towards a child with an additional need, or a disability happens in someone’s heart and mind. Believing in a child, wanting the best for them, and consistently looking for the reasons behind why difficult and dangerous behaviours happen can transform lives. Not just the child’s life but the outcome for their entire family.

Families need support instead of scrutiny -

Whilst there is always a real possibility that a child may be at risk of serious harm within their own family, it is unhelpful that families of SEND children feel that they are being judged and scrutinised during family assessments that are often a result of their own requests for help. The overwhelming majority of parents only want the very best for their children, and there must be a way of acknowledging this as part of an assessment process which is also robust enough to identify any child who is at risk.

Stay Curious. Be Kind. -

At Newbold Hope our motto is “Stay Curious. Be Kind”. When people stay curious and ask lots of “why?” questions, they remain open-minded and are much less likely to become judgemental towards the child, their family or the overall situation. We also know that there is always hope for this group of children. We now know of over a thousand children who have successfully moved completely beyond their violent behaviour episodes, and they are now much happier, and calmer, with hopeful futures ahead of them full of promise. Newbold Hope is a parent-led organisation run by a small team of families who have firsthand lived-experience of violent and challenging behaviour in a child with disabilities or additional needs. We who now work with families and professionals to enable them to gain
the skills, knowledge, and confidence to move other children towards much happier times.

Autistic adults and adults with a learning disability or ADHD are over-represented in the UK prison population -

We know that adults with diagnoses of certain conditions such as ADHD, Autism or a Learning Disability are significantly over-represented in the UK prison population. Helping children now to move beyond their difficult and dangerous behaviour episodes could give them a brighter and much more hopeful future to look forward to. The cost of doing nothing, or of pretending that the problem is much less widespread than it really is, is huge, both in financial and emotional terms. 

What parents told us

Here are just some of the 162 comments from parents, which give a realistic insight into how let down and unsupported they feel. -

“If things had been done properly back then, we wouldn't have a traumatised, violent, suicidal child now.”

“We are expected to just get on with it even when we are at our wits end and struggling. There is no sense of urgency to help families in crisis and it strikes me that with complex kids with lots of issues, there is a lot of shrugging of shoulders by professionals and no real desire to get to the root of issues and try to do anything that might help.”

“There also seems to be a general "understanding" that SEND violent and challenging behaviour can't be helped, I met with so many specialists, but they all shrugged when I mentioned aggressive behaviour, and offered little to no help.”

“No one is there to listen or help. I am bruised and battered at the moment... don't know who to get help from or even whether there is any help available...”

“There’s a constant assumption that behaviour must be the parents’ fault. Also, if the issues are only at home, it doesn't necessarily mean it's something that's happening at home, but they always think it does.”

“I’m in London and my son’s school is in Leicestershire. There are specialist schools for learning disabilities or pure behavioural issues, but nothing for the intelligent,
academically able SEND kids that can’t cope with mainstream.”

“I desperately need a school for my son. We're coming up to two years of him being out of education entirely.”

“I'm just sick to death of our most vulnerable children going without an education. It is the absolute most basic thing that every child deserves.”

“Post diagnosis support – any at all would be so helpful. Our GP asked me what I wanted him to do about it when I went to see him to discuss next steps after diagnosis. He had nothing to offer except a LA website which he described as hard to navigate.”

“Fragmented support that needs a detective to find and sort through. I'm completely fed up with being signposted here and there to various charities that just seem to send me to other organisations.”

“Stop blaming parents! A lot more education is needed for professionals as many of them just have no idea what families deal with. I quote from our CAMHS consultant “have you tried saying no?”. Yes, I have! Then the police ended up attending and then his arm was broken, and we ended up in hospital! “

“I hate living with the fear of being blamed, so I don’t ask for help or tell anyone what really happens at home.”

“I don’t even know where to start. The thought of this question is so overwhelming it makes me tearful. Everything, just everything, is broken. Schools, SEN support, social services, CAMHS, the lot. My life has been annihilated. My brilliant professional career is over. I put my heart and soul into supporting my family, and I am almost completely broken.”

“I am still so concerned about not being believed. Not being listened to. Not being taken seriously. I am on my knees begging for help and still, my word is being questioned whether my nonverbal child has pain. Now, I have a clinical psychologist from CAMHS in my home observing him. What are CAMHS going to do to reduce his pain? Nothing. Pain meds for 18 months gave him peace and tranquillity. Pain meds taken away in April and all the distress and big behaviour presentation has returned. If we rely on evidence-based practice, what more do they want? I am so fed up. My poor, poor child.”

“Why can’t they listen to the child and the parents and carers – the people who know them best and work closely with them?”

“The assumption of professionals within social care who believe it is all the parent's fault, that the families need "resilience" (I really dislike that word!!!) and parenting courses, instead of looking at the gaps in provision.”

“There must be much more accountability. Staff across services are not held responsible for the harm and damage they do to families.”

“Children often have to wait several years for any in-school support by which time it’s often too late and the child is traumatised and has developed emotional-based school attendance difficulties.”

“There are hundreds of children and young people and their families out there who are unable to access any NHS support for even life-threatening mental health conditions.”

“There is absolutely no help whatsoever for SEND teenagers addicted to drugs to self medicate. It’s a huge issue with lots of risks, and nobody even acknowledges that it happens.”

“Many CAMHS teams aren’t commissioned to provide mental health support to Autistic children and young people which means that some serious conditions are going untreated. CAMHS shouldn't be able to refuse to treat a child’s mental health just because the child is autistic.”

“Don't tell me we just need routine. Don't tell me that I just need to be firm. I can stop any random stranger in the street for that kind of quality of advice. I'm angry and exhausted.”

“Three children who have been totally let down by a system that could have helped. From CAMHS to the education or lack of. As others have said the trauma to the family in attempting navigating a system that pretends it’s there but isn’t, is huge. So many of us fighting the same fight. It’s utterly heart-breaking.”

“Real understanding and compassionate support is so badly needed for parents of violent children - someone to call other than police for help.”

“Until social care/family support can be accessed without fear, I will not use them. Until they can come in without a safeguarding approach, I will not voluntarily call them in. Until I know that they are, and I know that they understand neurodiversity with far more to offer than traditional parenting advice, they are of no use to us whatsoever. In fact, it would be extremely high risk for me to call them in, so we suffer in silence instead.”

“There has to be better (or any) Accountability for Local Authority staff. They currently act unlawfully with precisely no comeback so what's their incentive to do it right?”

“So much wasted time - time that should be spent helping our children develop happily into the best life they can have to become their best self - is deliberately squandered by budget holding bureaucrats. Family time wasted in the endless struggle to get the right help when it is needed, where it is needed.

“Why are educational and healthcare services stuck in the last century? Why haven’t things progressed? Everybody knows now that there are atypical presentations of autism and ADHD and other neurodevelopmental conditions. So why don’t the diagnostic manuals reflect this? Why is it so hard to get a professional to take us seriously and believe what we say? How invalidating must it feel for a young person to struggle every single day with difficult emotions, suppressing their true feelings, yet be told by everyone they’re ‘fine’, or ‘coping well’ or just they ‘don’t meet the diagnostic criteria’? Why is our education system basically the same now as it was 100 years ago?”

If you or someone you know is a parent of a SEND child with violent and challenging behaviour, we can help. You are very welcome to join our online community at Newbold Hope – Support Group for Families https://www.facebook.com/groups/SENDVCBProjFamilies/

Yvonne Newbold MBE
Founder – Newbold Hope
Website – https://newboldhope.simplero.com
Email – yvonne@yvonnenewbold.com
March 2022