Meeting with Ministers: your questions

[Inappropriatelyemployed]

I have been invited to a meeting with ministers in relation to SEN matters and I am keen to share your questions with them.

Additionally, I am involved in a proposal for research on the Equality Act and SEN law which will touch on the Children and Families Bill. It will involve as much investigation with families as we can manage so please do let me know if you have areas which you feel strongly about.

[2006hildy]

Have you ever thought of making a programme on the postcode lottery of Special Educational Needs provision. The provision is different from county to county. Even if it only ends up as a news clip.
I know this because I live in the Beds, Bucks and Herts border. Our NHS provision was with Bucks and Education with Herts and found we had to move our son?s GP to Herts so that all departments could communicate effectively.
I have a diagnosed Autistic son who went to the same preschool as John and Sally Bercow's son. Now that they are at school John Bercow reports his son has everything he needs being in Bucks.
However, it is a very different story for our son. I will be taking our LEA to tribunal for Refusal To Assess for Statutory Assessment in July. I already feel like I have been badly treated -people not giving me vital information, using semantics in a negative way twisting things, just being really slippery etc etc.
It's so unfair that John Bercow's clothing allowance is larger than our total annual Household Income so we can't afford to represent with a lawyer, at our Tribunal.
I want my son to have an education and not live on benefits for the rest of his life probably in a one bedroom bedsit. It is a lifelong disorder. Who will look after him once his parents have gone and he is still very vulnerable fully grown man? He is at the mercy of the opportunities and care available to him. In general, adults with special needs lack support and understanding in society at all levels.

By not assessing him they have written him off at the age of 3 the first time they refused a Statutory Assessment and not giving him the chance of an Education. He just has a developmental disorder. It was bad enough receiving the diagnosis the date of which I shall never forget like a birthday.
The LEA say he is getting all the help he requires but without a proper assessment how do they know he has got the most effective targeted help for his complex needs. It?s as though the have just stuck a plaster over his problems. If he is getting the right help, how come he is doing inadequately at school, well below the National Curriculum? It is known as a hidden disability, how can the just dish out standard strategies of help?
He has delayed expressive language, in effect, the inability to communicate effectively. There is nothing wrong with his intelligence he can still learn. We should not discount their often one tracked brains as it may produce genius. There are several famous people whom they think had Autism.
Fighting educational bureaucracy is exhausting why would I do it for the shear hell of it? I am sick of it and feel its hard enough being a mum to a special educational needs child, never mind battling the system as well. The Autism debate in the House of Commons on 19/11/12 4.30pm highlighted the fact, it is pretty much par for the course that there is no coherent nationwide approach.
I met a mum through a support group who has her statement now for her son, who is helping me with mine but has been left so bitter with the whole non service she is willing to help.
So I have written this essay in to you, in the hope it will help others too.

[Badvoc]

Zzzzz is spot on.
What's the point of all the assessments and dx when there is little/patchy provision once dx is made?
My son got a dx of severe dyslexia in 2011.
We - stupidly - assumed that he would then get the help he needed.
He has had no specialist interventions or 1-1 as recommended in the EP report.
So, as i said, what's the point?

[2tirednot2fight]

Good luck with that IE. I am sure you will touch on the delays and ineffective QA process involving the LGO given your own experiences, in terms of disability discrimination, my experiences suggest that even the most basic rights of children with disabilities are ignored and the notion that there is a bias of inclusion is simply not born out in reality, including children is not an add on for schools when they feel like doing so but should be an integral belief that practices are built upon.

I can't see the bill making any significant changes, even direct payments have turned out to be little more than an empty promise with strings attached to make them unworkable.

[bochead]

can you pm me your email?

I typed up a list of questions at the weekend to ask Brian Lamb in relation to my own LEA. However I'm not too well at the minute and am sure that your lawyers brain could make them far more pertinent and piercing than I ever could.

Mostly I want to know what accountability will be put in place - at every level from the individual classroom, to academies, & LA's to access to assessments and therapies. The current system is corrupt to the core.

Direct payments are no use at all if you don't meet the unpublished criteria to access the darn things. All that will happen is that the children of the great and good with mild issues will get everything on a plate while more severe cases will get dumped in PRU's & left to rot at ever younger ages. (reception NOT being considered too young!). That's just how nepotism, the old school tie and living in the right catchment are etc works.

[StarlightMcKenzie]

I'm concerned about the semantics wrt 'local offer'. If we are to focus on outcomes then I don't give a monkey's what is on 'offer'.

What I want to know is what support I can get to meet our family and my son's specific needs.

Here they are better than many, and they can 'offer' a very minimal service giving us a couple of hours a month of a special trained worker to spend some time with my disabled child so I can spend some time with my other children.

What we NEED, is for someone to spend some time with my children so that I can spend some 1:1 time with my ds and actually use the huge amount of training I have sourced in order to make a difference to his life chances, but are prevented from doing so due to having two smaller children.

But also, the word 'offer' doesn't mean anyone gets anything. A LA can offer a service in a rural location, during school hours for children miles away with parents who can't drive and publish that 'offer' and congratulate themselves on it, but what on earth good is that? How do they know that the 'offer' is a)relevant, b)needed, c)accessible and d)going to effect outcomes for their population.?

[StarlightMcKenzie]

Why are tribunal panels so frigging biased and incompetent?
Why is the LGO more incompetent/biased with SN issues than with other issues?
Why are there no consequences for LAs who don't even read the parental case for tribunal until the day of the tribunal?
Why don't LA's publish or even record the cost of tribunal and preparation in terms of staff time and legal advice?
Why are LA's allowed to refuse to disclose the 'lessons learned' information under a freedom of information request wrt tribunals. Surely if things were transparent and this information was available, parents would understand whether or not they had a case saving themselves and the LA considerable amounts of money, not to mention the tax payer.

[MummytoMog]

Make sure you have everything written down and give the officials at the meeting a copy of your questions. Follow up the meeting with a letter explaining exactly what you felt the minister agreed to look into/do. Copy it into everyone who was there. If you feel like he wasn't being helpful, put that in a letter and send it, copying it to the opposition spokesman for the policy area. If you really want the right people there, send an indicative line of questioning to his office a week before the meeting, and they can ensure he's briefed properly and supported by the policy officials.

[eggandcress]

Will you only be talking about education? We are struggling with our social services/children with disabilities team in an ill-making/stress inducing way.
Will this type of service come under the local offer?

[Inappropriatelyemployed]

Great - thanks guys.

The meeting has been arranged by a law firm and there will a group of parents meeting with ministers including Timpson to relate our experiences. Transparency and accountability are two key themes I think as processes which are transparent and over which there is accountability are much more likely to be fair and consistent.

The measurability of outcomes is also key. I don't want to battle for more hours or more provision and find it does no good and no one is interested in measuring its effectiveness. There's too much ineffective provision out there because NHS agencies don't want to work with children directly and pump out the same immeasurable guff all the time.

Boc - have PM'd you.

[StarlightMcKenzie]

The only possible reason for LA's refusing to disclose information about panel decisions, tribunal lessons and similar information is to deny children their entitlement, otherwise what would be the harm in having that information in the public domain?

Just because an LA sought legal advice, doesn't mean requests for the advice given should be refused on the sole basis of it being legal advice iyswim.

[miseryismyname]

There is a loophole around permanent exclusion that I feel needs to be addressed.
Schools can permanently exclude a child with a statement and then withdraw it within 3 weeks if another school is named on the sm. In the meantime the child and family have to go through extreme stress and anxiety and there is no way of appealing this decision. O.k, the exclusion is withdrawn and not on the child's record but the school can do this to the child and have no consequences. I think this can encourage some schools to exclude with no fear of reprisal even if they act unfairly. In our case I now have paperwork that shows the school had been planning this for several weeks beforehand and when the LA advised them of possible discrimination said that they had 'all bases covered'. Unless parents can afford a solicitor there is nothing that can be done about this injustice.

[AgnesDiPesto]

Accountability yes.

Recognising the gaps in complaint / appeal processes eg school are not accountable to anyone except DFE but any complaint would sit on DFE desk for very long time. Tribunals only able to award wasted legal and expert costs eg for last minute evidence but not awarding backdated costs e.g. if parent has paid out for education or LA have no defence. Can Judges do more active case management at early stage and throw out LA cases where no evidence. LGO cannot look at cases which have been to SEND - if tribunal doesn't award costs then LGO can't overrule that or say appeal should not have been defended. Only way to get backcosts is negligence for which no legal aid so in practice no redress for LAs acting badly even if LA deliberately put in a cheap package they knew was not meeting need.

Legal advice and expert fees at tribunal. Become essential to have advice eg it is impossible now to get residential provision without an expert saying there is a need for residential and if LA won't let their own expert say that then parents are forced to pay. LAs getting legal costs funded by public purse including barristers etc while parents cannot get legal aid unless on minimum income - legal aid should be in name of child. benefits of lawyers being involved early eg quick settlements, mediations etc Complete inequality of arms. Potential breach rules of natural justice. LAs exploit parents being unrepresented to overcomplicate cases and bamboozle parents.

Mediation - concern about how parents can agree to an education package at mediation when they are not experts - how can they know if a compromise package will meet need? Law says SEN must be met the whole concept of bargaining this out without legal or expert advice is very dodgy as a child could easily end up with an inadequate package as a parent would not nec know it was inadequate - at Tribunal there is in theory an expert panel overseeing the package is sufficient - at mediation there is no safeguard

Pathfinders - well they are mostly a joke - where has the money gone and has much of anything been tested. Will Pathfinders have to publish full reports of all their pilots not just highlights.

Direct payments who has actually tested them and given there is no appetite for DP among teachers, Heads, teacher unions, LAs etc then how are they going to give parents the choice they promised. Also how does this fit with commissioning duties on LA and NHS? Implies NHS will commission itself so no added choice or scrutiny.

School funding changes - huge fallout from this eg parents of high needs children being dissuaded from even applying to schools, schools saying can't meet need from own resources but child is below statement level so LA won't get involved, children having their 1:1 hours chopped from 20 to 2 so the school does not have to pay £6000 towards the statement, schools telling parents there is no sen funding anymore, no statements anymore etc etc - But as many of these children have no statement there is no legal redress or complaint route.

Early education / intervention - thinking about moving away from a school model (trying to fit children into an existing model of education) and setting up a model that fits childrens needs as in other countries. Most 2-3 year old children with ASD do not benefit from nursery education until they have gained basic skills in 1:1. Often children will be 4,5 or 6 before they can benefit from mainstream and then only after intensive work on behaviour, language, learning to learn skills etc. Look at a model where a child accesses mainstream education once they have demonstrated a level of skills to succeed there. So looking at providing early education instead through perhaps a more medical model of treatment centres and home therapy. Again I agree why diagnose autism at 2 if you have no services until school age (in our case mainstream nursery was not a service we wanted / that added any value but actually caused alot of distress). Why use mainstream nurseries as main place to provide early intervention when for some groups no evidence this is effective and often very distressing for everyone.

Can parents pool the early years budget eg take SLT, portage, free nursery place, 1:1 LSA cost, childcare 1:1, respite etc and roll that into a budget which could be spent on home (private) therapy if parents chose to home educate as a valid alternative to mainstream nursery

Minimum level of education eg 15 hours a week as per ASD guidelines 2002 - this was not supposed to be 15 hours of nursery care but 15 hours of specialist input

Evidence based practice / assessing outcomes / what works - look at block contracts eg NHS SLT and make them prove outcomes (ours does not even collect any data on children with autism to see if they make a difference or not yet still get a block contract)

Carers - why are they paid less than a teenager on JSA? Pay a living wage. Why is care not considered 'work' for various benefits. What about help with mortgages, home repairs, pensions, car etc. for those who will be lifelong carers. Early help to keep carers in work - what would this require eg specialist placements, SEN transport, specialist childcare etc which would need to be set up rapidly to stop parents losing their jobs. Current system is not quick or responsive enough to stop carers losing their jobs

What about support for siblings eg holiday schemes, soundproofing bedrooms - more flexibility - so respite budget can be spent creatively within the family not just for the disabled child eg it is often easier to place the sibling in a holiday activity than the disabled child.

Inappropriate use of child protection threats when SEN officers and parents disagree to discredit parents.

School exclusions esp unofficial exclusions and dodgy 'managed moves'

Getting rid of 'graduated approach' - the reverse should be offered - rapid intensive help. Support can be scaled down once progress is established and find point at which rate of progress drops - that is right level of intervention - graduated approach stores up huge costs for society later on as delays right help

ABA / other proven home programmes to be a viable option on same level as indep school, free school etc in the Bill - at moment still have to prove no school in area can meet need before get ed otherwise placement and fail many times

ABA in mainstream schools eg ABA units / small classes within schools with opportunities to access mainstream

Round year provision eg 48 week programmes, summer programmes.

Also provision that is more than school week e.g. 35 hour programmes. Support in the home - disability does not stop at school gate - parents need help to deal with behaviour, language, sleep, diet etc etc at home - expectation outreach into home. So most statements should be written with more than just school hours / school support

Compulsory requirement to seek parent feedback on all services which is published

A website where parents can report poor SEN services or professionals can whistle blow similar to that for adult social care (CQC?).

[Inappropriatelyemployed]

Thanks Agnes - amazingly thorough as usual .

[mymatemax]

We are in Suffolk & fortunate enough to have a choice of wonderful small villag primaries, however SEN provision in MS schools is entirely dependant on the headteacher at the time, there must be greater consistency in schools.

There is also no ASD specific provision within our county for children who do not meet the criterea for mod/severe learnng difficulties BUT they are not adequately catered for in MS schools either.
My son has mild physical disabilities, very low academic ability, autism but has a very good level of understanding and awareness.
So we have no option but to send him to the school that he sort of fits in to best where he is going to feel the least like a square peg in a roun whole rather than sending him to a school that really will suit his needs.

The number of out of county placements (many boarding),asd children with exclusions from ms school or placed in PRU really should tell the government that more specialist schools are neededs, surely one per county is not alot to ask for.

[MareeyaDolores]

Inappropriate use of child protection threats when SEN officers and parents disagree to discredit parents.

School exclusions esp unofficial exclusions and dodgy 'managed moves'

This is the worst bit, I think. The misapplication of existing laws and practices is what gives LEAs a really bad name amongst SEN parents. And it's not rare. I know several local families in RL who've been exposed to this, families where I am 100% certain that the suggestions of "safeguarding concerns" were wrong. Referral after referral, each one so misguided that it is very hard to believe it wasn't a deliberate, malicious tactic to try to bully fuss-making families. And in our area, the normal threshold for a full safeguarding assessment is very high indeed, so this is not just a safety-first culture.

[MareeyaDolores]

And yy accountability, yy (useful ones) outcome measures, yy flexibility, yy publish everything, yy problems with the £6k of school-held SEN funding.

[MareeyaDolores]

outcome measures camhs and based camhs research into in child neurodisability, helping paediatric physios and OTs develop robust outcome measures like their adult colleagues and apply what we know already

[MareeyaDolores]

sorry, a bit garbled, but those are various links about evidence based practice, and current accepted wisdom re outcomes data.

The NHS can already do this lot quite well for a range of physical issues in adults and it needs to start doing for children with disabilities ASAP.

[MareeyaDolores]

The current sorry mess is expensive, wasteful, ineffective, inhumane and damaging to society as a whole. We don't have enough SEN spending, but, tbh, we could still do much better even with much less, if the current knowledge was properly applied and integrated.

And with some well-targetted research, each year, provision could improve a little more, outcomes could improve a lot more, and possibly the overall cost would be a little less. With the usual caveat that savings from childhood interventions can take some years to show up.

[CouthySaysEatChoccyEggs]

What is going to happen to the support that DC's currently on SA or SA+ receive when everything changes, and SA & SA+ no longer exist?

If the schools are having to fund more for DC's with statements, it stands to reason that the place they will find the money to do this is the money that is currently used to support those DC's on SA+.

There are often DC's with multiple disabilities, SN's and SEN's still on SA+ because their LA refuses to assess for a statement, and the parents have no support to appeal that decision.

How is it that certain areas in certain LA's can get away with having no Parent Partnership officer for FOUR YEARS ("we can't attract anyone to the post"), yet the other side if town has a PP officer, yet we aren't allowed to be supported by them because our DC attend a school in the other half of town.

Legally, the LA has a duty to provide a Parent Partnership officer. How can you explain an area without one for 4 years?

[OneInEight]

Why do head-teachers have to permanently exclude before the LA moves into action - been told this by no less than three head-teachers.

What is the point of a child being seen by an educational psychologist and then them taking three months to write the report by which time said child has been permanently excluded.

Why can school not access support for autistic children before a diagnosis when the need is clearly there. Don't get me started on the inefficiencies of the NHS in terms of diagnosis.

Why when autism affects 1 in 100 children is there such little understanding of appropriate strategies by teachers.

[StarlightMcKenzie]

It may be that this minister learns a lot from you, but don't be surprised if he acts unsurprised.

I met a bunch of them and they all looked pretty unshocked at the stories and nodded along at the suggestions of the LGO being toothless. They've heard it before.

[OhYeaBaby]

don't want to hijack, but I am just about to name change as I also may have an opportunity to raise this on tele