What I told the Minister (& what I would have told him if I had more time!)

So what do you get when you put 11 very opinionated, passionate, at the end of their tether Mothers of children with Special Needs Children in a room with the Minister for children?  A meeting that almost became a group therapy session that could have run all day if the very harassed clock watching aides would have allowed it.

I'm third from the left in the black dress

I met with Edward Timpson, MP - officially known as the Parliamentary Undersecretary of State (Children & Families) earlier this week as part of a delegation of Bloggers with an interest in SEN invited by the Tots100 bloggers forum.  We were specifically invited to discuss our experiences of the Special Education Needs system - each of us bore our individual battle scars from our dealings with the system and over and over the same themes came up, and in a way it was good to know that I was not alone in my battle to ensure that ALL my children achieved their potential, regardless of their ability or disability, age or gender.


I think the Minister was left in no doubt that we were all bruised and battered and felt that the whole statementing process is adversarial as opposed to collaborative, as parents we are left to pull together all the agencies involved in our child's life, advocating for them, liaising between professionals, climbing the steep SEN learning curve to ensure our child gets what they need.  And all the time trying to be parents, parents of children with additional needs, of children...as one attendee pointed out - yes she got the statement for her child, she filled in the forms and did the paperwork but all the while her children were in the garden playing and laughing while she was stuck inside. That's the bottom line - we want to be parents, we want all our children to achieve, we want the best for them - but we don't want to be burned out by a process that seems to throw obstacle after obstacle in our path.

I had a chance to tell a little bit of my story to demonstrate where the process has worked and where it is not working.  I told the minister about the good bits - how Daisy is in the best school ever, how as a result she is developing in ways we never thought possible, how this was all down to early intervention and incredible support from the Early Years team in our area and ongoing support form a Key Worker. I contrasted the experience of SEN we had with Daisy with the one we have just gone through with Theo - how we had ended up funding our own assessments to get him diagnosed, how we were constantly pushed back, how the system wore us down, how to this day I still don't know who sat on the panels where my son's case was discussed and whether they fully read the papers that were given to them.

Everyone in the room got to tell their stories and it seems to me that some common themes were coming out over and over - I've summarised them as Intervention, Advocacy and Training.

Intervention

Intervention to me means getting in quickly, not letting a situation escalate until you find yourself where we were with Theo a couple of years ago - a child failing, struggling to access education and fulfil his potential.  So different from our experience with Daisy, mainly because of the degree of her disability from the moment she was discharged from the Neonatal unit she was picked up by the early years and Portage team.  At that point she had no other diagnosis than prematurity and global developmental delay, but the involvement of this team meant they were able to ensure she got good support in a mainstream playgroup, and then on into school.  I just remember it being smooth and seamless, we visited our preferred choice of setting, evidence was presented by professionals which supported this and she went there with a statement that fully supported her needs.  That is one thing that is working well in our area - a brilliant Portage and Early Years team, staffed by motivated, experienced professionals who really care, who know how the system works, who are parents themselves.  And the best bit - it was Daisy's neonatal consultant who made the referral when she was discharged so that the system would be in place to support her developmental needs.

Advocacy

Over and over in this blog I refer to my role as being an advocate for my children - but what about when you are trying to advocate against a closed door.  There is no parental representation on SEN panels, I'm not saying that parents should be involved but aside from the paperwork we submit and we hope they will read no one sits on the panel to represent the parent's view point and present the parent's argument.  Time and time again we find ourselves negotiating the bureaucratic minefield to pull together the agencies involved in our children's lives in order to get some sort of joined up thinking - why does it have to fall to parents?  And I am lucky, I am articulate, educated, I am not worrying about whether I have enough money to pay the gas meter, I have access to a computer, I can make it happen for my children, what about the parents who don't have this, what about their children?

Again we have a fantastic example of best practice through the involvement of a Key Worker in our lives, who, when necessary can also advocate for Theo because she understands the big picture and does not see Daisy and Theo in isolation but understands the whole impact of their individual needs on the family and our lives.  We are lucky because our Key Worker/Lead Practitioner is a unique person, she is passionate about ensuring children achieve and get the chances they deserve, a lot of what she does is not in her job description, she is one of those rare "when they made her they broke the mold" individuals, and we were lucky to end up on her radar.  But it shouldn't be like this, just because of a chance configuration of the planets we ended up with an advocate who was able to support us properly.

Training

So this all leads me to training - some people have that instinct, they just "get" SEN and know how to make the system work - we are fortunate that Theo's SENco (Special Education Needs coordinator - there is one for every school) is one of these people, so is Daisy's Key Worker.  But one of the reasons Theo was so badly failed by the system was that the people who should have identified that he needed support did not recognise it.  In his infant school years his very switched on class teacher had a conversation with us saying that it was obvious that Theo was (and is!) a very bright boy but he was having difficulty concentrating, she called in the Educational Psychologist who assessed him as being bored and needing to be stretched.  She made some recommendations and then we never saw her again.   When he moved into Junior school he was taught for two consecutive years by a newly qualified teacher - with my more experienced eyes I can see in hindsight the signs of Theo's aspergers and sensory difficulties manifesting themselves in those years, sadly the professional teaching him did not and neither did the school SENco and so he was lost to the system until we ended up going into debt to pay for private referrals and started our journey on the support and statementing bandwagon.  What I was shocked to learn at the meeting with the Minister was that teachers only get 4 days training on SEN when they are undergoing their teacher training, yet they are the professionals we rely on to identify our children's needs and where necessary bring in the professionals to provide advice and guidance on how best to support our child.  Often this professional is the school SENco, but they are also class teachers who have this as an additional role and it seems that the time allowed to them to actually perform their SEN duties is up to the discretion of the Head and the Governing Body.  I know the time involved in co-ordinating and supporting the SEN needs of two of my own children so how does  a busy school SENco get time to attend training, meetings, fill in forms and support the children in their school already identified as well as the ones who may have additional needs who need to be assessed?

So what do  I hope the Minister heard and took away from our conversations with him?

Firstly that early intervention to support and identify children with SEN is vital.  Daisy's needs were obvious, she has a visible disability, we knew she would need help.  Theo's needs were less obvious, his disability is less obvious and this is where training is so vital.  At every point in a child's journey in education staff should be aware of how to identify if there are additional needs or where a child may need some extra help to access the curriculum and how to support them.  We had a great hospital consultant who made a referral to the Early Years team and so Daisy's journey was clear.  Theo was let down by an inexperienced and newly qualified teacher and overworked SENco.  And wrapping around all of this is advocacy.  If we are going to break down this adversarial relationship that parents feel they have entered into when their child has SEN then we need to feel reassured that we are working collaboratively towards a common goal of helping the child achieve their potential, not fighting a system that can be bureaucratic, time consuming and confrontational.  Advocacy is so important - we were fortunate again with Theo to find a great advocate in the form of our local  Parent Partnership Officer, not everyone else is so lucky, or even is aware of the existence of the Parent Partnership organisation.  An advocate can help point parents to the right people so that they don't flounder around for years in a system.  There are some fantastic people out there who are doing good work and there are some mediocre people who are helping the system fail, it's those beacons of good practice that need to be pulled out to show how when the system works, it works well and supports the child and the family.

Edward Timpson seemed like a reasonable man, I don't think any of us held back when we told him about our experiences and unless he is a fantastic actor, he did seem to empathise and take this on board.  He is genuine about trying to understand what life is like in the world of SEN and that can't be a bad thing.  Our meeting over-ran but if you get a group of women together discussing a subject they are passionate about they will not stop so the conversations continued in the reception area, and along the road and into the coffee shop until we all looked at our watches and realised we had to be home for the school run!



4 comments:

Stephanie Nimmo said...

Good to know you were able to get your views across. I do agree with you that early intervention is a big plus. However, I suspect that is often hard for parents to question teachers and others when they are being told that everything is alright, which is also why raising awareness is so important. Let's hope the conversation continues.

Stephanie Nimmo said...

Brilliant. Think you've hit all the nails on the head there :) Advocacy, Keyworking, Early Intervention, Training - that shall be my mantra from now on. Let's just hope I'm not still saying it in 20 years, eh?!

Stephanie Nimmo said...

I am so proud of you all for going and representing us and for making the web of changes a little clearer.

Stephanie Nimmo said...

I'm from Canada so I can't relate to your post politically, but wow, can I ever relate emotionally!
Keep up your noble fight and change will come, hopefully for your family... And if not, for the next!

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