Guest post: “Implementing our recommendations would ensure all children with SEND can thrive”

[MumsnetGuestPosts]

Last week, after an 18-month investigation by MPs from across the political spectrum, the House of Commons Education Committee published its report into special educational needs and disabilities and the uphill struggle faced by thousands of families in securing support for children and young people.

We heard from more than 70 people in person and took submissions from hundreds more, including from parents and carers and young people with SEND – determined that they should be at the very heart of our inquiry.

The evidence that stuck most in my mind will be sadly all too familiar to Mumsnet users.

We heard from parents who were at the end of their tether, struggling to navigate the treacle of bureaucracy and find their way through a labyrinthian system.

We heard how many parents were having to take their case to Tribunal, and how many complaints were being upheld by the Local Government and Social Care Ombudsman, although not every parent has the resources (not just financial), to do this.

And we heard stories from parents of exactly what they were putting on the line during the fight for support – their mental health, their businesses, their relationships and their homes.

It is obvious that many parents face a titanic struggle just to try to ensure their child gets access to the right support.

The government now has the evidence that the system is dysfunctional and their reforms of 2014 are not working, but our recommendations provide a way ahead to ensure every child gets the support that they need.

To help parents, there should be a neutral role created to guide them through the needs assessment and Education Health and Care Plan process. They could give advice, assistance with all the paperwork and coordinate meetings, as well as making sure that children and young people are able to feed into the process. This type of role already exists for looked-after children – so we know there’s a model out there that could work.

We want to see the Ministers in the Department for Education really understanding the problems on the ground – which is why there is a need for parents and schools to be able to report directly to the Department when they believe local authorities are acting unlawfully.

There also needs to be more therapeutic support available for schools and pupils, which is why we have recommended that the government should look for and then fill in the gaps across the country.

We want to see more accountability, through stronger and more regular Ofsted inspections of schools and local authorities, including a greater focus on the training that local authority staff have. Greater accountability should go beyond tougher inspections. There should be more powers for the Local Government and Social Care Ombudsman to investigate what goes on behind the school gate.

Support for children with SEND should not stop when they leave school. I am a great proponent of apprenticeships to set our country’s young people on the path to employment. We want to see government departments coming together with private business to develop a strategy to create more opportunities for young people with SEND to find their way into employment.

Young people want to grab opportunities with both hands but the reality is they are currently being let down by a lack of ambition, support and opportunities.

Our messages are important and we want as many people as possible to read about what we’ve found. Summaries of our report are available in EasyRead, large print and audio formats.

Getting the right support for a child should not be a fight, and children and young people must be put at the heart of the system.

Implementing our recommendations would ensure all children with SEND can thrive and succeed in fulfilling their potential in life.

Please note that Robert Halfon won't be able to respond to comments on this guest post as parliament will be dissolved next week ahead of the general election.

[gran75]

What lets children with SEND down more than anything else are the irregularities of English spelling which make learning to read and write exceptionally difficult. They are of no help to anyone, but they are much worse for children with any kind of learning difficulty or disadvantage. The best way to improve their life chances is to make English spelling a bit more sensible. It is impossible to learn much of anything without learning at least to read first, and that could be achieved with quite modest spelling changes.

[namechange46]

Hilarious bonkers first comment there from @gran75

[perfectstorm]

We're currently going through this. It's screamingly obvious that our son can't do mainstream. we have a stack of NHS and LA reports that describe a specialist level of provision. But even though we live in an amazing area, in terms of brilliant, dedicated LA staff, they have to refuse almost all kids because they don't have the money. So we have to pay for a slew of specialist reports, and start down the road to Tribunal, to force the level of provision to which my son is legally entitled.

You want to know what adds to the joy? I've spent the last year in treatment for breast cancer, complete with major surgery, keyhole surgery. chemotherapy, radiotherapy, and long term drug treatments. I've been thrown into menopause overnight on health required grounds. And all while negotiating not just the EHCP process, but a home educated autistic child.

The worse part? We're lucky. We know what to do, and we have access to the ten to fifteen thousand pounds worth of credit this whole process is likely to cost. Yay, debt. Because so, so many parents don't even know that they need to do this, far less have the ability to locate that sort of money.

My husband's a civil servant. We rent. I have been at home with the kids since he was born, and that's unlikely to change for at least another decade. We're probably never going to be able to buy, because we'll be paying off the cost of getting him into a school that can meet needs. And we only applied for an EHCP because a new school opened, which can meet needs. We've home educated at ten thousand a year - that's what his tutors, and books, and transport, and outings, have cost us - for three years.

I'm not whining. I don't go on about any of this because what's the point? But people seem to assume that if your child is disabled, you get help. If you get cancer, a system swings into place to offer treatment, and emotional and practical help. If you have a disabled child, you're thrown into a chasm where you have to fight for absolutely everything.

He has an EHCP. But he can't do mainstream, so it's a chocolate teapot. He was suicidal at five and his mental health has improved beyond recognition, since coming home. We can't send him back - on sensory processing grounds alone, mainstream would break him. But we need to pay a consultant child psychiatrist to evidence that. On top of paying an ed psych, a SALT, and an OT, to reinforce the LA and NHS reports.

Again, I have enormous respect and actually, affection for so many people in our LA. They work hard, they care, and they are blamed for the system's failings. They aren't denying my son his legal right to a school he can access for any other reason than that if they gave that to all kids entitled, they'd be bankrupting the council within a year. So they have to be consistent, and they apply a resourced threshold massively higher than the legal one - and those few parents who do know to fight it through to Tribunal, and can afford to, and have the emotional energy to, win at a rate of 94%. We'll win, and we know we will. But the financial cost pales by comparison with the emotional.

This is one of the richest countries in the world, and it is failing its most vulnerable children in the most horrifyingly basic of ways. Home education rates are rocketing because of it - almost all the children in my son's teacher-led tutor groups have siblings in mainstream. Calling this elective home education is a joke.

The system is broken, utterly and impossibly.

[wonderstuff]

I work in secondary and I think that the current GCSEs and the system to measure attainment is not inclusive. GCSEs have huge amounts of content and are a massive memory test. It's really hard for lots of people with various neuro diverse conditions to remember enough of the content to get a good pass. In real life we don't need to remember vast quantities of information I don't understand why we feel the need for this in the GCSE.
Reduce the content, allow books in the English Lit exam, get rid of the middle bucket for A8 and allow more qualifications that are parallel to GCSEs. I also think there's a case for looking at assessing and reporting progress of students who can't do KS2 SATs or GCSEs. It is important that we are accountable for the progress of all children, including those taking entry level qualifications.

Too many incentives for schools to avoid taking on children with complex needs in mainstream and few incentives to do really good SEN support for students with complex needs.

And funding, teaching children with SEN is expensive, but the cost of failing them is far higher, we need to adequately fund education or we'll be paying a heavy price in the long-term.

[mariwhee]

We're just about to go to tribunal to get my ASD son out of mainstream where he cannot cope.

I don't think I participated in the survey but life is so difficult and complicated with a SEN kid that I may not remember it.

Everything that my son needs in terms of therapy is withheld due to lack of funding. We have just managed to fight our way through to a diagnosis (3 years all in!) and was told by CAMHS this week there's nothing more they can do.

They diagnose then discharge under the impression that school/education authority will provide therapy and support. They do not. School think CAMHS provide it. They do not.

A whole generation of kids with SEN are being brought up without specialist intervention, this is going to cost society MASSIVELY in the future. Without help, my son and the thousands of kids like him, will end up in prison, or permanent psychiatric care. If we can get him help now, he could thrive - but we have to fight for every last bit of support.

to the other mums in this position.

[Flanjango]

The systems been dysfunctional for years. There have been countless reports and enquiries that have cost thousands while delivering nothing. Local authorities set their own criteria and spend money supporting it despite it not meeting legal requirements, all the time telling Senco's and parents their fake rules. Give the LAs and schools funding and watch the barriers drop. Make authorities accountable with clear methods of recourse when they fail to ensure adequate education. Problem solved.

[Flanjango]

May I add most send parents could and have told them this for years....and for free

[DownRightAmazing]

I could say a lot on this topic but to keep it factual:

I'm going through the EHCP process for my daughter at the moment. The local authority have been difficult and obstructive at every stage - we started back in January. They (the LA) basically ignored us and disregarded their own rules throughout. We are going to tribunal - we have a court date in December - and suddenly the LA want to talk. They've now agreed about 3/4 of the things that we've asked for (and I suspect they will agree the rest soon), things that are obviously indicated and should've been included from the start. It's frustrating that we had to threaten court to get them to talk to us. Not everyone has the resource (financial, mental and time) or the ability (whether because of language or educational barriers) to go to tribunal.

[gran75]

I agree with Flanjango: "The systems been dysfunctional for years". Sadly, it will remain so for as long as the main remedy for making the lives of SEND children a bit fairer (improving the way English is spelt) gets dismissed as 'bonkers', like my first comment. Some children have such severe disabilities that they will never learn much academically, but the vast majority would benefit much more from their schooling if learning to read and write was made easier.

[BlankTimes]

@gran75

Reading is not a problem for all children with SEND.

Some read very early. Research Hyperlexia.

[namechange46]

My DS now attends a fantastic special school. It took two years of evidence gathering, EHCP admin and, eventually, tribunal to get him there.

I am an absolute shell of a human being. Utterly broken. He, thank God, is fine.

[Thistly]

I am humbled by some of the experiences related on here.

Just to add; it isn't just children with complex send issues that are being refused support.

My dd was diagnosed with dyslexia last year, but the school have resisted any action to support her. They cite inadequate budget as the reason.
My daughter would not be especially costly to support. The answer is basically a blanket ‘no’ and then parents who, like pp have mentioned, have the resources to fight, might get something eventually. But it’s very much a 2 class system.

My dd has a friend who has similar issues with reading and writing. His family have been unable to push for extra support for whatever reason. It’s not fair. He should at least be assessed. But he won’t be

[Shybutnotretiring]

There is a massive catch-22 at the heart of special needs education. To get an EHCP you have to really go to town on all your child's difficulties. But laying it on with a trowel in the way you are forced to runs the risk of talking your child out of a place at the kind of school your child needs to go to. It was nearly 2 years after my son started at his wonderful special school that the head of key stage 2 confided to me that he was very nearly rejected on the contents of his EHCP!

[SouthWestmom]

To help parents, there should be a neutral role created to guide them through the needs assessment and Education Health and Care Plan process. They could give advice, assistance with all the paperwork and coordinate meetings, as well as making sure that children and young people are able to feed into the process. This type of role already exists for looked-after children – so we know there’s a model out there that could work.

1. SENDIASS is meant to do this. Maybe revisit SENDIASS rather than reinventing the wheel

1. Funding was with drawn for independent support which was exactly this role

1. Only 1-2% of children and young people with SEND have an EHCP and yet everyone focusses on them and not improving access to SEN strategies and support in general.

[Grasspigeons]

I dont understand how the education select committee is going to get cross party support in parliament to deliver the solutions to these findings during these strange political times. The report will be a distant memory by the time a new government is formed.
I also think SENDIASS exists so improving that rather than creating a new thing is more sensible.
My main issue with the report is the lack of what to do for those without an ehcp. There still doesnt seem to be a suggestion of ring fencing funds in an enforceable way for children with SEN but no ehcp.

[OneInEight]

Sadly, I have no confidence that this review will make any difference whatsoever. As long as budgets are separated between schools, mental health services and social services they will continue to play pass the parcel with our vunerable children. Let alone the separation of children and adult's care which means children's service opt for the minimum of support and strategies to reduce costs in the short-term with no regard that overall they will be increasing care needs and costs when these children become adults.

[mariwhee]

But SENDIASS are not impartial, no matter what they say!

They're funded by the same local authority that are trying to save costs by cutting the amount of support Sen kids get. The council have a target of reducing the number of EHCP's by 200, and yet SendIASS operate out of the same office. Would you trust them?

Make them centrally funded and I might believe their independence.

[perfectstorm]

My main issue with the report is the lack of what to do for those without an ehcp. There still doesnt seem to be a suggestion of ring fencing funds in an enforceable way for children with SEN but no ehcp.

This should be a massive priority, yep. Outcomes are worse for SEN children without an EHCP, even though they're supposed to be significantly less disabled. That's a scandal nobody seems interested in even thinking about. And I say that as a parent of a child with an EHCP, well aware of how shockingly inadequate that provision is. We were in a far, far worse place in KS1, when because he's very bright and masked, the school refused to accept he had problems at all, far less on the scale now uncovered. They denied he needed even an ed psych - yet today, the first mainstream the LA are asking to take him came back in 24 hours saying they can't begin to meet needs on this scale. He's gone years without the support he needs because the understanding and support is so poor, they can't even identify needs to begin with.

The thresholds for help are getting higher and higher. Reviews won't change that - funding will. There's a horrendous funding crisis in education, with some schools closing early on Fridays because they can't afford to be open all week. There's no money for SEN. And it's easier to ignore needs than it is to meet them.

Personally I think that no school should be able to get an Outstanding if they have fewer than the national average of disabled children on roll. You do that, and you'd soon see the sorts of schools that carefully manage kids out, and treat parents so poorly they vote with their feet, worrying about provision. It would alter the present perverse incentive to provide as poorly as possible, so you get fewer disabled kids on roll, and convert it to a situation where you'd need to provide well or you'd lose the statistical requirement.

[PickAChew]

@gran75 has completely distracted me from the OP. If there's one thing both of my boys are good at, it's spelling!

[PickAChew]

IME all sendiass do is push the LA's default one size fits all agenda.

[woodpigeons]

I wonder if any of the people spoken to were Kinship Carers.
Many are struggling to bring up children with disabilities caused by prenatal exposure to drugs and alcohol.
Many are in poor health themselves and are struggling to bring up children on a small pension.
Most have no input or support from Social Services.
Most worry about the uncertain future for their children when they are no long able to care for them, especially as many of these children will not be able to support themselves by working.
I'm really not trying to minimise anyone else's experiences. We are all in very difficult situations.
I do feel though that we are a forgotten cohort and no matter how loud we shout nobody is listening.

[SouthWestmom]

Right so work on SENDIASS which is supposed to operate at arms length and be impartial - correct that don't just add another thing.

[Lalalalalalalalaland]

It's not just education.

We are so incredibly lucky/unlucky that our sons autism is so severe that the process to get an EHCP and a place at special school was easy as there was no other option.

We have now been waiting nearly a year for an appeal on my sons DLA, which is madness and the system is flawed. I helped fill in the form for a friend whos sons needs i know well, they are lower than my sons. Yet he got higher rate mobilith not questions asked. There is no standardisation, just the whim of whoever reads the form.

Despite input from a SEN social worker who wrote in her report that myself and my partners relationship had failed due to the pressures of raising our son and that we were finding it impossible to meet our other childrens needs because of the time dedicated to him we are still entitled to exactly 0!!! Hours respite per year.

We both somehow still work and pay tax, but the system as a whole is ridiculous.

[mariwhee]

Good idea Perfect Storm. We went to see a(n outstanding) mainstream academy for Y7 transfer and were shocked at the lack of provision or even space for Sen kids.

The senco admitted that they didn't really get many Sen kids going there (because they don't want them!)

[Onceuponatimethen]

I think it’s great there is an attempt to sort this.

I would start by removing the requirement for 6k zen support for a pupil to cons out of the school’s own budget. This sets parents and schools on a collision course and creates an environment when kids with sn are viewed as a drain on resources and a threat to finances.