By Rosie and Jo’s mum
I have been working with health and education professionals to get my children’s educational needs met for over ten years now. As time has gone on and their needs have increased, the opinions and recommendations from health professionals have been hard and harder to obtain in writing or at least in a useful format in writing.
I have generally found that CAMHS staff, community paediatricians and occupation therapists have been quick to understand the difficulties my girls have and quite vocal about what they needed their schools to do to minimise the impact on their well-being and their education.
I wouldn’t expect an OT or a psychologist to tell a teacher which phonics programme to use with my daughter or set out what spellings she should be learning. That would, of course, be completely inappropriate and that’s the kind of thing I would normally think of when I hear “We aren’t educators so we can’t make recommendations about school.”
Wouldn’t it be reasonable for an OT to make firm recommendations about specialist equipment children need? Couldn’t a CAMHS practitioner document a child’s anxiety and the effect it is having on their family life or the fact that the child’s account of their school life makes it clear that they need support, not sanctions for being unable to attend? Couldn’t they detail the type of provision that should be avoided/secured without recommending a specific school?
I have had numerous conversations with health professionals about the impact that the lack of adequate school provision is having on my child. These people have usually been happy to explain the potential long-term effects of not having their needs met and very clear about what needed to happen to make sure they were well supported and could have equal access to the curriculum. That’s all most of us ever want, after all.
The problem always when you get the letter or report that follows the appointment, if you get one at all. They don’t seem to say what you should expect.
I have OT reports that use the words “Children like these sometimes benefit from……” or “A helpful strategy could be…..”
In numerous CAMHS appointments, I’ve sat and listened to my girls talking about their feelings about being in school, what they find difficult, what they need to make thigs better. CAMHS practitioners have told me that my daughter needs one to one support and advance preparation for changes to routine. They were spot on. Also, that my child needs school provision where she can feel properly and consistently safe. I’ve been told very firmly that certain types of schools (e.g. BESD) would be a disaster for my daughter and the harm of trying to send her to one could be irreversible.
The verbal advice in the appointments has usually made perfect sense. Many times, I’ve thought “Oh thank goodness he gets it. This will help me get her what she needs.”
Then I look at what arrives in the post or what the professional concerned sent to the school/LA and it’s like the conversations we had face to face had never happened.
When I ask CAMHS to explain to the LA the effects of inadequate school provision on my daughter’s anxiety and mental health, suddenly, they aren’t able to express an opinion.
These people that could and should advocate for a child in severe distress seem to have lost their ability to record in writing all the things they can say to parents in appointments. I’m told “We aren’t educators so we can’t advise on school provision.”
The problem in a nutshell.
In order to convince the LA or school of our children’s needs, we are expected to provide evidence from professionals; experts in the field. Explaining those needs ourselves isn’t enough, no matter how great our expertise in our own child. How can we obtain that evidence if those professionals that are trained to see it, understand it and document it are not permitted to record it?
I am aware of several families who, right now, are in deep distress because their child’s school or LA is refusing to acknowledge the harm their child is coming to and while CAMHS can see it and confirm it in appointments, they can’t confirm the level of distress they have observed in the child, express opinions on the cause of that distress or make any sort of recommendations regarding the types of environment that should be provided or avoided.
I don’t know the reasons behind it but I could hazard a guess. Maybe they are related in some way to funding and conversations between LA and NHS managers at high levels. Maybe they don’t know what they are permitted to write so it’s safer to write nothing.
I do know it can put the parents in an impossible position. They are told by professionals that they are right about their children’s distress. The LA won’t listen to them without evidence and the professionals aren’t allowed to provide it.
There are numerous stories of parents who are utterly desperate, whose children are suicidal, self-harming, trashing their homes, shut down, assaulting their parents or unable to even walk into school and are being told that the very people with the skills to document their level of distress aren’t allowed to do so. Some are threatened with prosecution because their child can’t attend school and their GP, paediatrician and CAMHS are aware of their anxiety but won’t record it in any way.
I try to imagine how it must feel for those health professionals; to want to help children you can see are in severe distress or can’t access the curriculum but be prevented from expressing your professional opinion. It cannot be easy to come to work wanting to do the right thing and have your hands tied.
For once, my years of experience haven’t furnished me with pearls of wisdom for other parents starting on the SEN journey. Sadly, I really don’t know how we could help to solve this problem.
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