With Elly Chapple, parent of a disabled daughter
Elly Chapple is back with a hugely important topic. We’ve recently been hearing horror stories about children - many of them with SEND - being held in seclusion in school or restrained so that they end up with injuries.
"Various surveys have been undertaken that show that the use of force is endemic in the system, and we know that children get injured. However, there is not even an obligation to inform parents when potentially significant force is used against a child, and there is no duty to report the number of occasions when restraint has been used, as there now is with adults.
Norman Lamb MP
"This is a completely hidden area. When you think about residential schools, children’s homes, health units and assessment and treatment centres—particularly for children with mental ill health, a learning disability or autism—these are very vulnerable children, and we have no idea what is going on across the system."
There is a parliamentary debate this Thursday on Restrictive Interventions and Elly, along with the Challenging Behaviour Foundation, want you urgently (very urgently) to ask your MP to attend. While many might say that if children misbehave they must face consequences, Elly wants to open your mind to a different paradigm.
We need to #flipthenarrative on how we treat children and young people “who challenge” by Elly Chapple
I’d like to ask you to take a walk with me. By reading this article, perhaps you might feel differently, and you might serve to support the whole view for change. I’d like to ask you to not turn from this in fear, or hide it away in the depths of your mind. I’d like to encourage you to see beyond our thought sometimes that ‘this is happening to other people and it doesn’t affect me’. I’d like to ask you please to read this article with an open mind and heart. I’d like you to be brave and support a much-needed change for children, young people and adults who are your people, our people. I say that because we are a whole, not separate parts.
There were quite a few ‘asks’ within that. I often wonder if we register the demands we place upon others - others who might be perceived as different to us. Whether that perceived difference is from need, or lived experience or both, even though they are the same as we all are – human.
The Oneness of One
Asking people to ‘be’ like us, to do as we do, to think as we do. Is that right? Is there a defined ‘norm’ that we all must align ourselves with in linear fashion? I don’t think there is, and I think we know this. Every single one of us is diverse, every single one of us is different to the next person. So, I find myself wondering why we continue to see a drive towards sameness. Is it fear? Is it genuinely that we have lost our way? Is it a complexity narrative that has driven us to the point of ‘don’t know how to’ do differently? Are we the cause behind the way people respond and react?
We have all embraced diversity in one way or another, many have fought and won battles for the right to be included equally in life. Whether that is race, religion, gender, sexuality or any other part of society that has felt overshadowed or minimised - we have collectively stepped forward to support people in all walks of life having a right to be in our world, free from fear or distress. Yes, I know some of those battles are ongoing and I know there is still a long way to go for some – but the conversations are in the open and engaged with by many. So I wonder why we still allow one part of society to be overshadowed, pushed into the dark recesses of our minds, out of sight, and continue as if it is not happening.
On Thursday 25th April 2019 there is an extremely important parliamentary debate on a motion relating to restrictive intervention of children and young people. This debate will be led by Norman Lamb MP, supported by MPs, Helen Hayes, Anne-Marie Trevelyan, Carolyn Harris and others.
It is a human motion. It asks that we stop and reframe why we need to move forward with a positive solution, to support those who need our help the most - across the breadth of society. We are talking about people currently in ATUs, mental health units, private treatment facilities, residential units, schools, respite facilities, children’s homes – in short, anywhere children, young people or adults leave their families to be cared for and supported by others. The law is clear that their rights must be upheld. These rights apply to all human beings regardless of difference.
At this moment in our society their rights are not upheld in many cases and they are on a daily basis living through situations that you or I would find terrifying and hugely distressing.
What is “Challenging Behaviour”?
Challenging behaviour is often perceived as a ‘problem’ or ‘illness’ to be ‘treated’, ‘cured’ or stopped. The problem is seen as being part of the child or adult rather than focussing on what needs to change around the individual, such as their environment or how people support them. This approach is unhelpful and can be damaging, particularly when restrictive responses are used. We need to look beyond the behaviour, understand what the behaviour is communicating and then provide appropriate person centred, holistic support to enable individuals to achieve their full potential.
Challenging Behaviour Foundation
Beth Morrison and Kate Sanger are two people I have had the privilege of working with, alongside Vivienne Cooper and Jacqui Shurlock of the Challenging Behaviour Foundation and other members of the RRSIC group1 (Reducing Restrictive Interventions and Safeguarding Children) to bring about this crucial debate on Thursday. But we cannot do this alone, we need your help and your commitment to change.
I find myself looking at the whole view and often thinking, as so many do, that if we acted sooner, if we included equally across life, from the earliest point possible - would it be the case that people’s rights were not upheld? Would people be hidden from view even in plain sight? Is the real issue one that we still cannot fathom difference in our lives? That there are certain types of difference that we can comfortably engage with and others not? Does disability or difference frighten us still? Does someone ‘behaving’ differently to our individual perception of how we should ‘be’ create awkwardness for us, or make us feel like we can’t engage? Is it difficult for people who don’t encounter difference daily to know what to do? Is that acceptable?
‘The largest trigger of challenging behaviour is people’.
McDonnell, A.A the Reflective journey: a guide for practitioners (2019)
Professor Andy McDonnell, above, is actually referring to those supporting children, young people or adults in that quote – not those in distress, in essence – us. The premise being that if we ourselves are accepting of difference, wide in our view of the whole, calm and attuned, then we will affect the situation positively. If we are not, then we are likely to increase the response to our actions or presence negatively. As Gareth Morewood discusses:
‘Difficulties arise for teachers and parent/carers if they cannot recognise that the children are displaying difficulties with emotion regulation, or with a task’ (Jahromi et al, 2012)’
Morewood, G. D. Understanding Emotional Regulation in the Context of Whole School Inclusive Systems, Incluvision 2019 p. 6
Like anything that we are not sure about or have enough experience of, there needs to be training to develop understanding of specific support relevant to need. People who work with my daughter, for example, need training to understand how the world is perceived for a Deafblind child and how to communicate using sign language. There is also an absolute need to ensure that this is possible via necessary funding. But I do also feel ultimately it is down to us all to have a will to learn about our fellow humans and want to include them. No amount of money can buy engagement or acceptance.
Significant numbers of children at risk of restraint
The recent report conducted by the Challenging Behaviour Foundation and PABSS (Positive and Active Behaviour Support Scotland), Reducing Restrictive Intervention of Children and Young People Case study and survey results January 2019, demonstrated that significant numbers of pupils within school settings (both mainstream and special schools) were at risk of restraint and seclusion. The findings of the report were summarised as follows:
- 88% of the 204 respondents to the CBF survey said their disabled child had experienced physical restraint, with 35% reporting it happening regularly.
- 71% of families completing the CBF survey said their child had experienced seclusion - 21% reported that this was taking place on a daily basis.
- Of the respondents to the CBF survey 50% of children had been prescribed medication to manage challenging behaviour.
- Most of the restrictive interventions reported in the CBF survey were taking place in schools; for example, 68% of the physical interventions.
- The PABSS collection of case studies included 1058 reports of restraint and 544 reports of seclusion.
The report further highlights that:
91% of CBF survey respondents reported an emotional impact on their child. “Incontinence, meltdowns, shutdowns, unable to communicate as overloaded with emotions and information”
The report discusses that families found their child’s behaviour became worse with the restrictive intervention, rather than changed or more positive. This would indicate that the use of restraint and restrictive interventions play a key role in the increase of trauma for a child (and indeed any human being) often creating fear rather than instilling any form of support or strategy. As BD Perry discusses:
‘The more any neural system is activated, the more it will modify and ‘build’ in the functional capacities associated with that activation. The more someone practices the piano, the more the motor-vestibular neural systems involved in that behavior become ‘engrained.’ The more someone is exposed to a second language, the more the neurobiological networks allowing that language to be perceived and spoken will modify. And the more threat related neural systems are activated during development, the more they will become ‘built in.’
Perry, B.D. The neurodevelopmental impact of violence in childhood. Chapter 18: In Textbook of Child and Adolescent Forensic Psychiatry, (Eds., D. Schetky and E.P. Benedek) American Psychiatric Press, Inc., Washington, D.C. pp. 221-238, 2001
Fighting fire with fire makes things worse
In essence, we are creating an affirmation of an in-built negative response to a stressful situation for a child or person if we respond with what is be perceived as threat-based responses to their distress. If children are responded to with empathy and understanding, supporting them through ‘extreme levels of frightened arousal’ 2 with appropriate communication suitable to their needs, then they are more likely to be able to develop their own communication of distress and their needs and wants like any other. Children who have difficulty with verbal communication and or limited ways in which to communicate in other ways, are more at risk of stress in their lives if they cannot explain how they feel in the moment and we don’t acknowledge that they are trying to communicate.
The people I am talking about are people like my daughter, who still are hidden a lot of the time from our whole society view. By writing this, I do not intend to imbue further a tragedy narrative (as George Julian poignantly stated), which is holding us back from the breaking of a new dawn to see difference as part of the whole. I share it because I believe that some people still do not know about the reality of the change needed, and the why or the how. And I firmly believe that as one, we do have it within us to be whole in our view and support everyone.
It’s not easy but it’s worth it
Why do I view it like this? I do not think that it is merely naïve or wishful thinking, I think it is borne out of experience that could have destroyed everything, but my daughter showed me how to heal and begin to believe in humanity again as she did. That it takes time and a huge amount of work. That it is harder than anything I have ever done, but her will for change and to ‘be’ in our world drives me and those working with us.
She is one of hundreds of stories that are happening daily, in this country, in 2019. My daughter is one of the lucky ones. I say that now with hindsight and much work over the past five years towards her recovery that is ongoing daily, but which has in effect moved from a tragedy in loss of sight to giving us vision to find a better way.
The very real danger we face is that if we don’t find it within ourselves to engage and #flipthenarrative from one of ‘less' to equal, we are all complicit in driving further the negative narrative from start to end – that people with difference risk being hidden away, hurt, distressed, and treated less than others. That the very real and long-term human cost will continue to increase and with that, the financial cost also. By ignoring this situation, it is simply making it worse. That isn’t something I feel proud of at all, as a human being in 2019. And I don’t think anyone else would either.
So, this is a call to arms. A call to put our collective arms around those who are still not part of the whole view for many. Those who are enduring unacceptable daily situations and require us all to make the change fast. A human request that we open our hearts, minds and arms to be truly accepting of difference, remaining curious about what we do not know, rather than fearful. That we support our people and do not cause them harm. As I said, it is down to us all to have a will to learn about our fellow humans and want to include them equally with empathy, compassion and ultimately humanity. We are all different, yet the same. One.
Please do write and encourage your MP to attend on Thursday. The short video shared here explains our story and also our friends Kathleen Sanger and Beth Morrison.
Please encourage your MP to attend using the template letter from the CBF available to download here: http://bit.ly/2TuTMst
References:
- 1Restraint Reduction Network, Mencap, the Council for Disabled Children, the National Association of Special Schools, and the NSPCC.
- Bessel Van Der Kolk, M.D. The Body Keeps the Score, 2015
Also read: Seclusion Rooms: What Every Parent and Professional Should Know
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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