What parents told the government’s review into the SEND reforms

Last week, a group of eight parents, including me and Renata, went along to the Department of Education in London to pass on our experiences of the special educational needs reforms.

If you recall, SNJ had been asked to invite some parents for a round-table session with Lee Scott, who is leading a review of the SEND reforms for the Education Secretary, Nicky Morgan. Mr Scott is a former conservative MP and is also patron of the UK Autism Foundation.

It was a very successful meeting and every parent got to speak about their family’s experiences – and they were not good. Some parents’ poor experiences of finding special educational needs support for their children began long before the reforms and they haven’t improved since. In fact, they have often got even worse.

"The process still simply isn’t working for too many of us"

One of the parents who came along was Mel Hardcastle. She's offered her take on the meeting:

“Our meeting and the experiences shared by all seemed to point to some very clear common difficulties with the EHC reforms.

"All of our children had different special needs, were from different counties and at different levels of the process, but one thing was exactly the same: our fight to get our children the help they need for educational provision. We had all experienced a very debilitating experience trying to access provision, which had in most cases placed additional pressures on our children, our wider family and as individuals ourselves and this had been at emotional and financial cost.

"The reforms which are designed to put children and families at the heart of the process still simply isn’t working for too many of us, fundamentally because there is no accountability at the local authority.

"Lee Scott listened intently to every one of us and I feel his words were sincere in that he is equally passionate about SEN.  It would be good to hear directly back what points were directly passed to those at the higher level.

"For me, what we all seemed to be saying was that LAs, solicitors representing them and even the schools themselves need to be held accountable for their practices in relation to requests for EHCPs which supports the need for a code of conduct, as SNJ is proposing.

"However, I’m a little sad that after Baker Small Twitter-storm, councils only stopped using them because of the social media public outrage at the law firm's tactics, not because they listened to what parents have said all along. If the LAs wanted to truly follow the principles of the SEN reforms, why have they continued to allow solicitors to try to thwart parents and- until now -gone hand-in-hand with the tactics clearly designed to make it as difficult as possible for parents?

"My prevailing view is that for LAs and schools, it’s a budget management issue, not a child rights and welfare issue. Overall, however, I’m encouraged that we were very much listened to at the meeting, but as many parents as possible need to be making their voice heard to make sure change happens by blogging, supporting forums and knocking on the doors of their local MPs.

"Lee genuinely seems to 'get' how life works at the SEND coalface"

Matt Keer, parent of children who are deaf, has written for SNJ before about culture change in the SEND reforms. He was also one of the parents who came along to the DfE to speak to Lee Scott.

"It was depressing to see that so many of us were going through the same sort of struggle with the same sort of culture in local authorities, even though the new legislation has been in place for a while now. But it was encouraging to talk with Lee; he genuinely seems to 'get' how life works at the SEND coalface, and seems driven to try to improve everyone's lot.

"The same message was hammered home again and again by many of us: the legislation is fine, but without proper local accountability it won't achieve much. I don't know how far Lee's report will be able to drive change there - it's for others to take the necessary action. But I have no doubt that he'll try, if he thinks it's right."

"It shouldn't be a battle.  It should be a collaborative process."

"We need a fairer process, which doesn’t rely on a parent’s ability to proactively navigate a complex system or depend upon them sitting with a copy of the Children and Families Act and a highlighter at 2am."
Also among the parent group was Sarah Downs, mother of a child with a  undiagnosed condition.

"It was fantastic to have the opportunity to feed into the review of the SEND reforms, although disheartening to hear the stories from around the table. Despite each of us having such different circumstances, the same themes ran throughout - a lack of accountability from local authorities and the need for culture change.

"As another parent pointed out to me, our case should be relatively easy.  My son is almost five.  He has complex health needs which affect him daily.  He is a wheelchair user.  He has no form of communication. His needs clearly span health, education and social care. The policy around EHCP transition and the funding of statements in the interim is clearly laid out.

"Yet we still find ourselves struggling our way through this process, with multiple breeches of policy along the way and little means to ensure that the SEN Code of Practice is followed. There is little to challenge about my son's needs, as they are impossible to deny.  If we are facing this level of confusion, stress and anxiety, I can only imagine how it must be for families who have a more contentious battle to fight.  And it shouldn't be a battle.  It should be a collaborative process.  Yet the stories of families around the table said otherwise.

"We vitally need change within local authorities to ensure that law is not optional, families are viewed as collaborators and cases do not progress all the way to tribunal.  We need a fairer process, which doesn’t rely on a parent’s ability to proactively navigate a complex system or depend upon them sitting with a copy of the Children and Families Act and a highlighter at 2am.

The review of the SEND reforms and the SNJ campaign may just be a means to bring about the beginnings of change.  Listening to the families of older children and teenagers, I certainly hope so.  Like many parents of young children with disabilities, we are scared for the future.  I can’t help but feel it just shouldn’t be that way.

Funding petition takes off

screen shot of petitionA petition is also running, highlighting one of the aims of our code of conduct – to stop local authorities using money from the SEND budget, to pay for external lawyers at the Tribunal.

The petition, organised by a group of SEND parents is entitled: "SEN budgets need to be ring-fenced for children's education not LA legal fees."

The petition already has thousands of names and if you can also sign it, please do.

Some other news from social media

New companies house filing for Mark Small
Click to enlarge
Interestingly, word reaches us via social media that Mark Small has formed a new company "Essential Special Educational Needs." I have picked up that he is planning to "change sides". My stomach has turned, ever so slightly. 

I would have thought a period of quiet contemplation would have been preferable. Perhaps he should be reminded that this is not supposed to be a game of two sides. We are working for a better society where 'fighting' gives way to the right thing being done just because it's the right bloody thing.

Keep sending in your ideas for an inclusive Code of Conduct

Our proposed Code of Conduct encompasses the funding issue and goes further towards making the culture change that is so badly needed, closer to a reality. We’ve been sent so many detailed responses to the preliminary proposals and also your own, additional ideas. We really need your input and backing to make this as inclusive and comprehensive as possible.

In the coming weeks, we’ll draw up a refined proposal that everyone needs to express opinions on what is actually workable. This isn’t only for parents to pitch in on, we need the views submitted of SEND professionals, local authorities and also the law firms that represent both LAs and parents as well. 

At its heart, it’s just a promise to behave in an honourable, transparent and honest way that puts the child at the centre. It needs to be something that everyone, including parents, should be happy to sign.

Keep your views - or just an expression of your support - coming in. Read the outline post and send in your thoughts and support.

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Tania Tirraoro
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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome. Trustee, Genetic Alliance UK.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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  • Vague

    Well, I have just had a request for Statutory Assessment turned down. The school put it in. They are funding a 1-1 out of their own pocket. The LA says they can meet my daughter’s needs from the normal SEN arrangements available to them in school. 20 hours of 1-1 goes well beyond the SEN budget allocation! And my daughter really needs more support than she’s getting, more expertise, and a full assessment of what her needs truly are. But no-one was surprised the LA said no. Apparently they always do. To slow down the process. Because they are far behind the legal targets. Illegal blanket policy? The CoP says they must carry out a Stat Ass if a child has or may have SEN and someone makes a request. If not, they have to show why they do not believe it to be necessary. I don’t believe they have shown it not to be necessary. 7 years ago they turned down my request for my son to be assessed as well, and had no such “pressures” of being behind. It is a knee-jerk response of this particular LA, especially for children with autism. I will win my fight, I know I will, but it shouldn’t have to be a fight, and it will cost them more money in the long run than simply doing their job would.

    • I know you’re in my LA. Go back and ask them to back that up with numbers. If your child has 20 hours 1-1 from a TA, then that must mean it costs the school approx 4/7ths the entire salary of that TA just for your child. Which is more than £6k. In any case, this is not the absolute criteria. All you have to prove in the CoP is that your child has an SEN. 20 hours of TA support proves that. Email me your particular local area imfo@ specialneedsjungle.com

  • Annonymum

    It’s ‘nice’ that he listened attentively, and that he was sincere, and also passionate… But what of it? We can’t keep hanging on hoping for real concrete change, that will make a real difference to this awful dreadfully flawed system, …but instead hearing about niceness, and promises to do better, or boasting about how brilliant it already is (…when the reality is, that it isn’t brilliant, not even a tiny bit brilliant). Even reading this article got me worried, ‘…we need change to ensure cases do not progress all the way to tribunal’ Will someone please ring the panic bells loudly? – Local Authorities are I believe habitually taking these cases AS FAR AS tribunal doors, but no further. So they concede at the last moment, having caused maximum damage to families finances, to their emotional resources, to the stress inflicted upon the children who don’t have time to do transitions at the end of the battle. And yes, it is a battle – and one that subsequently flies beneath the radar. Tribunals that don’t take place, don’t show up on the statistics do they? And the measure of fairer, can’t be based on ability to proactively navigate the system, although I’m not disputing that, but we need to be saying loud and clear that the costs involved are huge. We are talking about parents needing vast sums of money to bring forward the necessary information (in the form of assessments and presentation of the information) to challenge the culture of denying services to our children. I’m also worried that for every parent with their copy of the Children and Families Act armed with highlighter pen, there are a hundred without it, or any idea of what they’d do with it in any case. This is well beyond something that a lay-person can tackle by themselves…
    and it is a million miles beyond fair, that those with massive challenges in bringing up their child/ren with Special Educational Needs are having to even try.
    Finally, I noted with interest that Mark Small has already set up a new company. He is clearly a man with a lot of time on his hands right now. I suspect he even sneaks in the occasional cryptic crossword if his new twitter-handle is anything to go by…

    • Yes I agree with everything you say and this is why the Code of Conduct is so important so that these practices are named and LAs coming to stop doing it. I think imagining we can sit back and hope someone else will fix it for us is a mistake as is simply complaining about our poor lot.
      We need to create this code of conduct and lobby the Dfe and LAs and law firms and parents and professionals (in no particular order) to commit to it. This will start to build culture change, I believe which will impact on all, not just those with the highlighters.
      Naysayers can scoff and say it won’t do any good, but neither will doing nothing or criticising those who try. We are all exhausted – and I’ve been in this for a decade- but we cannot give up so that those who are not able to blog or tweet or campaign can still benefit.
      We know the problems – we need to work on OUR OWN solutions to create the behaviour that WE want to see. We need to do rather than be done to. Please join this campaign if you are able to try to make a parent-led change.

      • Annonymum

        Oh I’m doing things, sharing petitions, lobbying friends and families, trying to signpost parents to information, desperately trying to make sense of what to do about my own unfolding scenario… But the sad truth is that I don’t know what to suggest. If the government have made a piece of legally enshrined policy which the Local Authorities are running rough-shod over, because they claim not to have the resources to go around anymore, how is anything other than a massive input of government spending going to actually bring the change in real terms? I honestly and truly don’t mean to be critical of the work being done, …I’m just frightened.

        • I understand – also just seen your Twitter dm – I’m very behind with everything.
          We can only do what we can do but it’s not money, LAs have had plenty of implementation money, it’s the will to change hearts and minds. And this is where we can make a difference with the CoC and make a large enough noise that they have to respond like the BS tweets

          • Gerard Ryan

            Unfortunately I think it is about money.
            LAs are juggling budgets and will only spend what they are forced to spend – I.e. when we fight them and win our case. Many parents just accept what they are told by the LA and don’t take it any further, so the default LA position saves them money. Fighting the case can also save the LA money as they then defer incurring costs.

            If all the support or placements we could possibly want were actually free, I don’t think any LA would object – unless they thought it was the thin edge of the wedge and result in costs to them later.

            Although I believe this is about money, it is not about recent austerity as the adversarial approach goes back many many years.

          • Gerard Ryan

            Unfortunately I think it is down to money. LAs are juggling budgets and will only spend what they are forced to spend – by parents winning their cases. Many parents accept what the LA tells them and don’t take things further which saves money for the LA. Saying no by default at the very least defers costs being incurred.

            If all support and placements we could wish for were free, LAs would not object – unless they thought it was the thin end of the wedge and would lead to cost later.

            Although I believe this is primarily down to money, I don’t believe it is due to recent austerity measures – these fights have been going on for many many years.

  • Kate Robinson

    Quick question about the petition at – it’s dated 16 December and there’s a note that petitions run for six months. Does that mean it expired on June 16? If so, can it be relaunched?

    • No I think that’s the expiry date, was launched on June 16th x

      • Kate Robinson

        Doh! Sorry Tania… great, I’ve sent the link to a lot of parents.

  • Carrie

    We have had battle after battle over the past three years. And before that too with another child. I cant see things changing in a hurry. No surprises re Mark Small’s new enterprise – his former side kick (whose name notably pops up in the UT published SEN appeals) switched sides and set up SEN Action a while back. These firms may all be perfectly legitimate but they do not shy away from using litigation wherever possible. And why? Because a market exists.

    The real issue is why parents/young people have to appeal against a decision the LA has already made as a public body which is supposedly accountable to elected members, if not the public. Why aren’t councillors more interested? Why is it that children and young people are still being written off despite the spouted rhetoric? The true cost to the public purse is incalculable. Its not just LA and school resources that enter the equation. The costs of Tribunals, legal aid, benefits, mental health, etc all have to be factored in.

    But the true cost to the child/young person is even greater. To say nothing of the pressure families are placed under simply because they are compelled to support their children.

    I would personally like the SEN assessment process to be completely independent of LA’s. At the moment there is a conflict of interest and statutory SEN assessments and EHCP’s (when you can get them) are resource driven not needs led. Its not rocket science to recognise the need to separate assessment from resources. LA’s could easily commission such assessments. It could be modelled on the HE Disabled Student Allowance model. But the proof is in the pudding. Politicians don’t really care: the HE system is moving away from the DSA (independent assessment) model towards placing the responsibility for meeting SEN on the HE institutions. The ideology remains the same. Let the schools/colleges/universities sort it out from within their existing resources. And in the meantime lets be seen to be doing. Give people a right of appeal that is inaccessible to many in practice. And let them pay heavily for the privilege when they exercise that right. And let everyone in positions of public responsibility and trust hide behind the idea that as long as due process can be seen to have been followed that’s okay.

    There is a long, long way to go. But we must keep fighting for what is right.

  • elsiep

    LAs are by no means blameless. But the SEN system has been designed by central government. So has the mainstream education system within which the SEN system sits. LA funding is very closely controlled by central government. LAs have been expected to implement a major change at the same time as having their funding cut massively. It can’t be done.

    If the new reforms are implemented properly children with SEND should get their needs met and there could be significant financial savings in the medium to long term. But in the short term change costs. LAs still have a conflict of interest and on top of that they are now between a rock and a hard place. At root, this is a problem with the design of the system, not an LA problem or solicitor-with-the-wrong-attitude problem.

    • Thanks for your comment – I think you’re right about the root and this is what has exacerbated the current chaos. However, attitudes can make a huge difference when egos and self-interest are set aside so that the child is central – and there is full transparency.

  • Chantal Chaervey

    I do hope you had a representative from Suffolk, we have been deserted by all those who should have provided guidance to parents. Suffolk is getting away with murder,
    I have just won a first tier tribunal but have had to use ridiculous methods to get the care element referenced,
    It is ridiculous that local authority,s can get away with such behaviour.
    When I contacted the d of e I was told they cannot comment, as they are responsible for the implementation of policy. They did however with good intention sign post me, but ridiculous as it may seem they are not aware that these areas are useless