Firstly, as I always like to say at this time of year, for those of us who work in the academic world, we are now just past the half-way point of the year.
In this update, you find sections entitled:
As I also always say, I know how busy everyone is, so please feel free to read just the sections that are of interest to you or read everything; the choice is always yours.
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IT’S MY RIGHT TO BE WRONG (CAPACITY ISSUES)
I have increasingly noticed over the past few years that many people (some of whom I thought would know better) seem to have a hard time coming to terms with the issue of young people with SEN having the mental capacity and ability to make decisions about their own lives.
Please do not get me wrong, mental capacity has always been a major cause for concern where young people with SEN are the subject, but the law states clearly that there is always an assumption of capacity for them, unless all practical steps have been taken to help them, without success. Importantly, there is also a difference between someone having no capacity and them making unwise decisions.
In essence, if someone is deemed to have capacity, they have the legal right to make a decision, even if you or I think that they are making the wrong choice. For example, just because a young person with SEN makes a decision, which their parents or others may not have made, this does not automatically mean that they lack capacity. Obviously, in some situations, a young person with SEN (perhaps with Severe Learning Difficulties) may not have capacity, but in other cases, it may not be so clear-cut.
This was very much brought home to me recently, when I attended a workshop on mental capacity run by the Council for Disabled Children (CDC) at the end of January 2017 (more about which I refer to below).
The person running the workshop pointed out to us that mental capacity also means having the ability to make a single decision at a single time. She also said that time constraints in life when growing up can sometimes mean that young people with SEN may not have had the same experiences of making decisions as other young people, even simple decisions such as what to wear, what to eat, etc.
It was highlighted to us that even simple everyday decisions that we need to take can sometimes actually be quite complex when they are broken down into their component parts or steps; and our decisions are usually based on past experiences of what works/does not work, including any mistakes that we have made, but that we have been able to learn from.
She stressed that we should presume that everyone can make their own decisions, unless it is proved otherwise. Young people with SEN are not to be judged as incapable of making a decision unless all practical steps have been taken to help them to do so, without success.
Finally, it was said that when it comes to deciding whether or not someone has capacity, it is really a functional test on how a decision is made. The focus should not be on the consequences of that decision.
One thing I gained from the workshop that really struck home for me was an understanding that we should give young people with SEN the chance to build up their resilience in life, by allowing them to take risks and make mistakes sometimes. This was also brilliantly demonstrated to us through the session also being an interactive one, where role play was used with the assistance of a drama group, which included a young person with SEN and her mother (who did not have SEN).
I would highly encourage people to see this workshop for themselves if they get the chance; I believe it is a workshop that is also given around the country by CDC. Even though I have experience professionally of dealing with capacity issues, it was very interesting for me to see things from a different perspective.
I was so taken by this that when I came home that evening, over dinner, I discussed the capacity issue with my 18 year old daughter, Tali (who does not have SEN). All of my three children (or should I say young people now) are in their late teens currently.
I explained to Tali in detail the scenario that had been demonstrated to us by the drama group, where an 18 year old young woman with SEN had wanted to do a particular course of study at college that was different to the one that her mother wanted her to do (she wanted to do a course on hairdressing, but her mother wanted her to do business studies). The young woman also wanted to go to a party that weekend with her 17 year old sister (who did not have SEN) and get drunk.
Although her mother was dead set against both ideas for her at first, but did not seem too perturbed about her sister going out and getting drunk (remember the sister was still under 18, but the young woman with SEN was already 18).
It was only when the dispute between the mother and the daughter was mediated by a third party that the young woman with SEN clearly demonstrated to her mother that she had actually carefully thought out all of the implications of both decisions and how to deal with them (e.g. wanting to do a job which she enjoyed and also the fact that she would know that she could suffer through drinking, had made arrangements to get home, etc).
We eventually saw her mother come round and accept she should allow her to do these things - she even reminded herself that she was also young once!
But I was then very surprised when my daughter (remember, although I have been advocating for children and young people’s rights for many years, to my children I am just a ‘grumpy old dad’!) said that the mother was right to try and impose her will on her daughter as she had SEN and was therefore vulnerable, even though I pointed out that the young woman with SEN was already 18 (the same age as my daughter) and stressed that, objectively, she did seem to have the capacity to make her own decisions, even if they seemed mistaken.
Strange, but true!
It is very interesting when tables seem to be turned like this and it is actually your own teenage daughter who seems to be more overprotective towards a young person with SEN than you are.
I had to stress a number of times the fact that it was only by being allowed to make these decisions that a young person (even with SEN) would be able to build up resilience and be able to learn from their own mistakes. I even pointed out that by effectively ‘wrapping her up in cotton wool’, we could be actually doing the young woman with SEN a disservice in the long run.
There is probably not very much more for me to say about this issue, but I believe it is important for me to raise it here with you, as I feel it is quite thought-provoking.
I would also just say that it may be very interesting if, during the next few days or weeks, you have this same kind of conversation with various family members (especially teenage children) and/or friends or colleagues, to see what their responses are.
Remember, it is a right to be wrong sometimes.
GOT A STORY TO TELL? (THE LENEHAN INQUIRY)
The CDC conference was chaired by their Director, Dame Christine Lenehan, who has recently completed a review into the care of children with learning disabilities, entitled ‘These Are Our Children’, where she was asked by the Department of Health to take a strategic overview and recommend practical action that can be taken to coordinate care, support and treatment for children and young people with complex needs and behaviours involving mental health problems and learning disabilities and/or autism.
Dame Lenehan’s report makes 11 recommendations for Government departments and partners at a national level on how to improve the system. The report runs to 37 pages and, if this is something that concerns you, I would encourage you to read it for yourselves here: ‘These Are Our Children’
However, during the conference, hot off the press, Dame Lenehan also announced that she had also just been asked by the Government to lead a further independent review into the experiences and outcomes of children and young people in residential special schools and colleges, which would report back this summer (2017).
As she said in a letter that was handed out to all delegates:
‘These children and young people are some of the most vulnerable in the country’ and ‘the review will recommend the practical action that government departments and other agencies can take to support positive experiences and outcomes for these children and young people.’
At the end of her letter she said that, to ensure her review was informed by as wide a range of views as possible, she was launching a ‘Call For Evidence’ and wanted to hear from a range of people, including those working in residential special schools and colleges, children and young people attending residential special schools and colleges and their parents & carers, and children, young people and adults who have left residential special schools and colleges.
She also said that she wants to hear from local authorities, representative bodies across the sector, and academics with an interest in this area.
I know that my SEN updates are read by a very wide assortment of people, from parents and carers of children and young people with SEN (and those representing them), as well those working in education, health or care areas.
I therefore strongly encourage people to send their stories/views to Dame Lenehan at Lenehan.Review@education.gov.uk (by 17 March 2017). You can find out more information here.
CRISIS, WHAT CRISIS? (FUNDING DIFFICULTIES)
Unless you have been living in an alternative universe, or have not been watching or listening to the news of late, you cannot have failed to notice that there is now widespread concern about funding difficulties for the NHS and local authorities, which are having a severe impact on their services. Many people are calling it a ‘crisis’.
This is something that really bothers me because, although I sincerely believe that appropriate specialist provision should be made for children and young people with SEN or disabilities, it would be unrealistic of me to not also take into account that this is sometimes quite complex and involve expensive provision, which will sometimes have an impact on the financial ability of services to be provided for other children and young people.
That being said, I am often astounded by how money is sometimes wasted, or at least not used as efficiently as it perhaps could be, especially as some disputes could be resolved at a much earlier stage through collaboration or ‘Working Together’; for example, between parents and carers (and those representing them) and professionals (and those representing them), or between different services (like local authorities and the NHS).
It also uneases me when people only seem to take a short-term view of things, rather than more of a long-term view (e.g. more provision now may be more costly now, but less costly in the long term, whereas less provision now may be less costly now but more costly later [e.g. the cost of adult social care or welfare benefits]). But I also appreciate that budgets are often set for a financial year (from April to March) and we need to consider realistic situations, not just hypothetical ones.
To be honest, I do not think that there is a ‘right’ answer to all of this that will satisfy everyone. What I think we all have to acknowledge though, is the fact that our public services are under great strain at the moment, so I think it is even more important for all of us to try to appreciate the difficulties being faced by ‘the other side’, whether that be parents and carers to professionals, or professionals to parents and carers.
I also know that saying something like this, is often much easier than actually doing it, but I really do feel that the sooner we all accept that we are all in this together (where have I heard that before!), the sooner we can try to find a way to get through all of this successfully.
RECENT/FORTHCOMING SEN EVENTS
As I have already referred to above, I attended a Council for Disabled Children (CDC) conference in January 2017, entitled: ‘SEND: New Challenges, New Opportunities’.
We heard from a selection of speakers including, amongst others, people from the Department for Education, from NHS England, from the SEND Tribunal, and from Ofsted/the Care Quality Commission (CQC).
It is always interesting for me to hear perspectives and information by people from other disciplines, such as health and care, rather than only from the area which I know best (i.e. education). I am also grateful to CDC for letting me/all delegates have a ‘goody bag’ to take away, which included a number of resources they had produced, including guides to relevant issues and examples of good practice.
In terms of forthcoming SEN events, this is the time of year when I remind people about the following events coming up:
As seems usual now, I will again be speaking this year at the Jordan’s Conference. My presentation this year is entitled ‘All That Glitters Is Not Gold’ and I am using it as a chance for me to help people take stock of where we are, now we are well over halfway through the transition from the old SEN framework to the new SEN framework (which began in September 2014 and is due to be completed by April 2018).
If you are at one of these events and see me, please say ‘hello’ if you can.
WHEN YOUR WORLD TURNS UPSIDE DOWN
Although I was only formally diagnosed with having a physical disability myself (Cerebellar Ataxia) about 13 years ago, when I was 37 years old (yes, I am now 50!), I only started having to use a wheelchair to get around about seven years ago.
As I had no experience of knowing how best to use a manual wheelchair and there did not seem to be any training available to me (e.g. I had not been in an accident, so was not in a hospital where help may have been made available to me), I used my professional knowledge of helping children with disabilities to try and help myself. I was very fortunate to meet someone called Roy Wild and be allowed to join one of the training sessions (over two days) run by his organisation called Go Kids Go! (formerly known as the Association of Wheelchair Children). They kindly allowed me to come on one of their two day courses for children, even though I was an adult!
I remember the course fondly. There were only about 10 of us there and, as you can probably guess, the other nine participants were children - either disabled children who also needed to learn how to use a wheelchair for the first time like me, or siblings who also needed to understand how to use a wheelchair, so that they could help them if they needed to.
It was quite an intensive two days during which we learned many things, such as:
I have many stories I could recount for you, but here are just two…
I vividly remember lunchtime on the first day. I thought that I would be able to take a nap in a quiet corner (my condition causes me fatigue). I was quickly woken up by one of the children who said that they wanted to play wheelchair rugby, but were one short and wanted me to join them and make up the numbers.
I have never played something so dangerous before though! They all seemed more than happy to crash their wheelchairs into one another in order to get hold of the ball, so that they could try and score in their opponent’s goal. I came away with the backs of my hands cut and bleeding – it was that dangerous!
However, the most memorable thing for me was learning how we should react to avoid a head injury if we fell backwards in our wheelchair. On the morning of the first day, our trainer (a physiotherapist called Owen McGhee) gently explained to us that he would soon approach each one of us in turn and gently lower us backwards in our wheelchairs.
He told us that, as soon as we felt our sense of gravity change, we should lift our heads up/forward, so that when the chair fell backwards to the floor, we would not hit our heads on the ground, which could cause us concussion. Owen subsequently did this to us all one by one and I remember my turn being gently pulled over backwards, lifting my head when I felt my centre of gravity change and then eventually seeing the world upside down.
That afternoon of the first day, he said that he was going to do the same thing to us again, but quicker this time. On the morning of the second day, he again explained to us that he would be pulling us backwards again and he did it quicker still. I didn’t know what to expect, but we all started to somehow react more quickly.
Then, on the last afternoon, I remember quietly sitting in my wheelchair waiting for the next session to begin, when I suddenly felt myself being tipped backwards without any warning. I now almost instinctively lifted my head up, as I felt the back of my chair crash to the ground and roll me out.
The last thing that I remember was me seeing everything upside down and Owen’s legs walking away from me.
I didn’t see that one coming!
With best wishes
by Douglas Silas, specialist SEN Solicitor