Attitudes towards professionals

[Lougle]

I'm an 'old' face on this board. I used to be quite prolific in posting, then I took a step back...now I lurk.

I have always read the board, contributed and encouraged parents to be proactive and assertive with professionals.

Now, however, I have been increasingly disturbed by the wave of militancy I have seen here. It has disturbed me so much, that on the many occasions I have started to post, I have realised I have nothing to say that will be received.

What has happened to us? As a community, we used to be a body of people who would give new parents, desparate for advice and direction, clear, objective advice. Advice that encouraged them to ask questions, push forward their path to answers.

Now, I see new parents being given what I view to be propoganda. No longer advice alone, but a politicicised viewpoint of Us vs. Them. The Them being health and education professionals.

Thread after thread with the sentiment that cost is the only motivator for professionals. That all our children are being sold short. That nobody cares for their child. That TEACCH is rubbish. That only ABA will do. That you need to FIGHT and you need to attack.

It isn't so.

I am shocked and saddened. I am displaced. I am no longer sure of where I belong.

We spend our time moaning that professionals don't want to work with us. If attitudes are as they are expressed on this board right now, what is there to work with???

STARLIGHT- I make no apologies for wanting the best for my son-As others point out,it is not necessarily the most expensive provision that is the best
In those terms I believe that you are also striving for the best provision for YOUR son

WILLOW- unfortunately Special schools do not always have experienced sn trained staff-They certainly do not all offer adequate provision-in teaching or environment

I appreciate I am in a different situation to many as my DS is at SS- I have seen MS schooling failing the son of a close friend-he is now at home with no provision (he has aspergers)His mother is articulate and tenacious and she is struggling.

I don't honestly see the threads on here as political, propaganda or militant. I just see them as common sense.

What Star and I and others have banged on about for the past few years is actually for the professionals to implement those things which the govt has already decided it should eg proper effective key workers to guide even the least clued up parent through the system and ensure children do get equitable provision - if we had proper key workers with some objectivity eg articulate parents trained as key workers to new families then more children would have good provision. We want Lamb implemented. We want the 15 hours a week ASD intervention for every child - not 15 hours of childcare. We want a NICE type system of assessing approaches for SEN and proper research. Like approving a new drug - some open accountable system which says this is an acceptable approach if its what the parent wants. That looks to see if an approach is value for money. Some quality assessment and assurance. LAs to follow the COP and guidance. Childcare so we can work. All areas to have even one special school -at my parents house in London I could reach 5 ASD schools, here I would have to drive 50 miles. All the guidance and legislation already exists for all of this. So how can it be militant? I asked my LA why they had not implemented 'Together from the Start' which i think is guidance from 2003, they said they were working on it

I also don't think i have come across parents who ask for more than they need.

I also don't agree with this (sorry!): "There is not enough for everyone to have everything. Professionals have to assess how much each one can have from a shrinking cake. I simply do not agree that it will benefit others to fight to get everything, cake, icing and all for our own children."

The law says every child is entitled to an appropriate education. Once a need has been identified it has to be met regardless of resources. That is the law. resources do not come into it. This idea that one child is taking from another is really damaging. Its also not true. What we need is a bigger pot. That means all parents of children with SEN jointly fighting their corner and saying we need a bigger piece of the pie to start with. Why is it easier to get physio from a ski accident than for a disabled child; or SALT easier for an elderly stroke victim that a non verbal child? A report came out last year which said childrens NHS services were vastly underfunded compared to adults. So why do SALTS accept poor services, why not join forces with parents? Why not spill the beans on how awful the provision is.

This idea that there is this limited pot of money is just wrong. It is as a society what we decide is important, where we choose to spend our money and our kids are not getting it. Because most voters are over 50, we prioritise cancer treatment even for those who may be seen as undeserving. We spend more on a treatment that might buy a smoker an extra year than we do on a SEN child's entire schooling. Why? If this is a purely financial argument where is the logic in investing in someone who is going to die soon anyway, over a child at 2. What about gastric bands, IVF, breast implants, viagra, the royal family, foreign wars etc etc. If the discussion is about funding and resources being limited these are all valid arguments. We can as a country afford to give every child a gold standard education, we choose not to.

Also good intervention saves money. £200,000 of ABA for a severe ASD child with a high IQ will most likely turn them into an adult who can live independently and hold down a job and become a tax payer - rather than an adult who needs residential care and a life of welfare benefits. Studies on the economics of ABA have shown this.

The argument seems to me a lot wider than SEN child -v- SEN child. Its how the whole tax take is carved up. What do we as society value?

Why do we spend £1 million in the first year to keep a very premature child alive whose life may be very limited but not spend £100,000 on ABA for a 2 year old which would mean they catch up with their peers by age 6? Why do we keep that child alive at any costs but then tell the parents to get on with it and offer inappropriate schooling once they leave hospital or leave them with no respite? Why did we keep that child alive if we are not going to look after that child for the next 70 years. Why do we prioritise being alive rather than quality of life? How much of what we spend money on is guided by tabloid headlines.

Some things capture the public imagination or are politically useful. Kids with disabilities are a minority and therefore invisible and not politically relevant

As a society we decided - and legislated - that we would give every child an adequate education that helps them fulfil their potential. So under the law every child is entitled to the same and because one child gets an expensive special school place / ABA it does not make it less likely the next child will. It just means we need more places. The difference is in whether parents know their rights and enforce them and many of us on here go out of our way to help those who come after us / who are less able to do so, not just on here but in RL as well.

My LA believes in this idea the pot of money is fixed and they must dish it out in an ever diluted way. Why do LAs not join with parents and professionals and tell the govt that the money is not enough? Or argue with other depts for a bigger budget.

Every single secondary school in my area has sports facilities to rival a private school - why? because most people who are council tax payers are middle aged and middle class with kids. But they spend far too little on children with SEN and intend to spend even less. So LAs make their choices too. It seems to me fairness would require them to get the education of every child up a level that was adequate before they start gold plating the education of a particular cohort of mainly white, middle class 11-16 year olds.

Everything you say is so true Agnes.
What 'militants' fight dfor is nothing less than what thry should have anyway, according to all relevant codes of practice and guidelines.
Believe me,I know.I spent a year of my life reading them all.

Most professionals haven't read them (snowed under with the ineffective ways of working we have) and wouldn't know half of them existed.I do. What I discovered for my own child is now of direct use to the scores I now work with .One of the biggest sources of satisfaction to me is pointing out what shoudl be happening and what we need to adhere to legally.

Most people are delighted when they learn of key recommendations.They want to be freed up to be more effective.

I let many of my colleagues know about the landmark rulings on listed on IPSEA.Received a great many emails thanking me for letting them know!

Great posts, both Agnes and Moondog. Agnes is right that LAs cannot use "lack of money" as a legal argument not give SN children an education that meets their needs and does not disrupt the education of others. The trouble is that the LA often use that other weasel -wording in the legislation to slide out of offering anything decent - "the education has to be suitable for the child's educational needs". Of course the LA can always come up with a tame EP who will argue suitability against the parents. But money alone is specifically NOT permitted to be used as legal grounds against a parent.

I also wanted to add that if anyone wants to start threads on treatments/therapies that really helped their autistic kids - whether that be TEACCH or GFCF diets - it's a free country. Why doesn't someone start a thread on "TEACCH is fab for my autistic kid and he has learned lots of stuff". I would be interested to read it (and no, I wouldn't just attack it willy-nilly, I would read it). If TEACCH is the prevailing education system in this country, currently educating literally 1000s of autistic kids across the UK, there must be some good news stories? Even from kids who are lower functioning?

Moondog kept something I wrote after my very first TAC meeting and I wonder if she would post it here (as I don't have it any more).

I think it shows clearly what the problems are. The problems are NOT that individual professionals are not working hard enough or not busy enough or don't have enough money. The problem is that the focus of their time is not on outcomes for reasons within and outside of their direct control.

Agnesdipesto

You are right about the need for a research based education system based on waht has been used in the medical sector. And the most important need is for an Educational Research Council, similar to the Medical Research Council, to research all aspects of education to and in particular to investigate the neurology of how we learn, and how some of us learn differently from others. The technology to do this have become available in the last decade or so.
So it is possible to detect how the brain reacts to various forms of stimulation and which areas of the brain react and process the information from the various types of input. This will help identify the alternative types of stimulation required to help those who have poorly functioning of not functions areas of the brain.
This will require a higher standard of teacher qualification, which has been dumbed down since the 1980s as the Teacher Training corriculum (can never spell that word) has been diluted to save training costs.

Currently the government has an education policy promoting disability discrimination, due to the lack of good quality research taken into account by the UK educational professionals. There is no real research done into education issues, and most of waht has been done id funded by those who have some form of program to sell to education providers such as LEAs and Government Departments. Some of this if you really investigated the funding motivations would see what is more like corruption, as it would be viewed in any other domain.

What you say makes a lot of sense Dolfrog, like the idea of the General Educational Council.

Could not agree more about teacher training. I did the PGCE course at one of the most respected institutions and it was rubbish, really flabby and vague, absolutely sod-all about disability and not even very much about teaching (but a whole lot about "pastoral care").

I also like your point that the Education authorities are actually discriminating against the disabled themselves, by not bothering to research how best they can learn and just shoving any old program together!.

good post agnes, much I agree with and much food for thought. one question - do elderly stroke victims really get a decent deal re:NHS SALT? ( meaning for ongoing care re:aphasia etc, rather than potential life and death decisions re:swallowing) would be surprised tbh if community services for the elderly were significantly better than those for kids with SN.

My Dad was a teacher-trainer and even he said it was rubbish. On top of that he kept getting teachers who he couldn't pass and keep his integrity so he failed them and had his assessment overruled by the college who had target pass rates to get .

Not saying here all teachers are rubbish, - am saying that lots of rubbish teachers are passed.

I am not saying anyone gets a decent deal I am just saying disabled children are sadly pretty far down the list! I think being admitted to hospital does bump you up the list ahead of children who develop problems more gradually.

For eg if my son had been brain damaged in a car accident instead of losing his skills through an autistic regression he would not have been discharged from hospital without a plan of action and follow ups with SALT, OT, physio etc etc. Yet his regression was so severe it was the same effect as a car accident (literally he lost 2 years of skills within a week or so) and we had to wait over 6 months for someone who turned up and said you are doing a great job I don't need to come back.

I think the NHS model has alot of advantages over the education model - not least the oath to do no harm! But I am not saying the NHS model is perfect or always well funded.

As this report said:

"Perhaps the most obvious, although somewhat crude, measure of the priority given to children and young people by the NHS is the amount of funding allocated to their care as a proportion of the total funds of the NHS. The total allocation to the NHS is around £110 billion. The overall amount spent on children and young people is not clear (which may itself say something), but DH estimates that the figure is around £6.7 billion.
The RCPCH offers the estimate of £3.1 billion (2007). The Healthcare Commission put the figure at £3.2 billion (2008). The differences may lie
in the extent that a service can be disaggregated and that the element wholly dedicated to children and young people can be identified. The spending on CAMHS is said by DH to be £523 million. Another way of assessing the balance of spending is to compare what is spent on the NHS for the care of children and young people with that spent by other services. The social care budget is £4 billion. The budget for education is £35.4 billion. The spending on children and young people (including those up to age 25) by the criminal justice system is said to be £7 billion. How much of this last amount could be saved through a strategic shift of policy and resource by the NHS to preventative measures, and early intervention to support children and families at risk, is a theme that I shall pursue."

My personal view is that national govt and an independent national body needs to take charge of SEN and what should / should not be funded and the money should be ring fenced. Leaving it to council administrators is a really bad idea. Why does an SEN officer get to overrule a paediatrician, two psychologists, a SALT and a nursery? Which is what happened to us. Its like getting the consultant's secretary to decide what operation you need.

thanks for the answer agnes to my question agnes, yes I suspect a consultant referal might speed things up a bit compared to GP/HV.

Here it is Star.

'I have had an incredible amount of practice in a short space of time. I was not like this at the start I can assure you. I didn't know I had to be, for one thing. I suppose when you go into high adrenaline meetings week after week after week, you start to lose your sensitivity and become a bit more direct and focussed.

I remember by first multi-agency ?Team around the Child? meeting. I was there, humble, hopeful, scared, on the verge of tears, desperate. It sounded great. This person was going to 'advise', that person was going to 'refer', another person was going to 'monitor' and another going to send ds's case to a 'panel', and someone else was going to send his case to a 'board'. Yet another person was going to put together a 'programme' and someone else was going to 'assess'. We were going to get 'support' and my son was to get 'therapy'. Someone else was going to 'investigate' the 'opportunities' that our LEA had for children such as my son, and someone else was going to 'liaise' with us.

A couple of months later and I realised that some if not ALL of the above was happening in terms of moving funds and delegating money to people's case-loads, but yet not one single OUTCOME had occured for my son.
In fact we hardly saw anyone, they were all busy referring, and investigating and writing programmes or whatever.I hung around here a bit complaining and apologising and thinking ' Oh, he's only little, we have lots of time'.

Then I came across you (Moondog) who said simply 'Stop whingeing and do it yourself then, and get a bloody move on!' The best advice I ever had!

I love these. It sums up most public sector work and mentality.

Parkinson?s Laws

Parkinson's First Law: Work expands to fill the time available.
Parkinson's Second Law: Expenditures rise to meet income.
Parkinson's Third Law: Expansion means complexity; and complexity decay.
Parkinson's Fourth Law: The number of people in any working group tends to increase regardless of the amount of work to be done.
Parkinson's Fifth Law: If there is a way to delay an important decision the good bureaucracy, public or private, will find it.
Parkinson's Law of Sience: The progress of science varies inversely with the number of journals published.
Parkinson's Law of Delay: Delay is the deadliest form of denial.
Parkinson's Law of Data: Data expands to fill the space available.
Parkinson's Law of Meetings: The time spent in a meeting on an item is inversely propotional to its value (up to a limit).
Parkinson's Law of 1000: An enterprise employing more than 1000 people becomes a self-perpetuating empire, creating so much internal work that it no longer needs any contact with the outside world.
Mrs. Parkinson's Law: Heat produced by pressure expands to fill the mind available, from which it can pass only to a cooler mind.

This is the best I think

Parkinson's Law of 1000: An enterprise employing more than 1000 people becomes a self-perpetuating empire, creating so much internal work that it no longer needs any contact with the outside world.

yep, that pretty much reflects my experience of LEA local pre-school inclusion services, providing virtually nothing, without even being able to get basic admin right.

Yes, I'd like to pick up on the point Sickof made about anyone being free to post on any subject (which brings to mind the other thread with some posters claiming people were loathe to post as it has apparently gone very pro ABA on MN.)

Bring it on! We need to hear about everything and why and how people think it helped their children whether anecdotally or as confirmed by objective data.

Many people post here on therapies I wouldn't go for as a professional or an s/lt, such as Johanssen's Sound Therapy, AIT. retained reflex therapy and conditions whose existence I am unsure of, such as APD.

I do however read the threads, pursue the links and find it all very interesting and in all the above examples, respected posters have posted stuff that had made me sit up and think and examine the evidence more closely.

I try to keep an open but essentially fairly cynical mind as my modest training in evidence based practice has taught me to do.

What I don't do is miracle cures. They don't exist.

I don't think it is fair to write off 'public sector work and mentality' quite so negatively. As an ex-nurse, none of your Parkinson's Laws apply to the work I saw going on busy NHS wards, apart from possibly 1000.

moondog
may be you would like to read an article advising your profession in the USA
Auditory Processing Disorders: An Update for Speech-Language Pathologists this is one of many on this particular topic.
And as a point of interest the first UK APD clinic was run by an Speech and Language Pathologist at Sheffield University and funded by the MNS , before the Medical Research Council Began its first 5 year APD research program in 2004.
Great Ormond Street Hospital are now providing a multi-discipline APD assessment, audiologists diagnose the APD, Speech and Langauge pathologists assess the affects of APD have on speech and language development, and psychologists assess the issues causes by having to live with APD.

And speech and langauge pathologists are on the multi - discipline professional UK APD Steering Committee.

Thanks Dolfrog.
You had cited some of these before.
Sheffield Uni's sl/t course and people are top notch so it says a lot if they are involved.

I said most Bakelite.
By no means all.

I don't however assume that because one works in the public sector, one is by definition a dedicated overworked underpaid 'professional'. I dislike that sort of mentality.

Actually, Agnes, I've worked with a young person following a devastating insult to the brain which left him "locked in" and physically disabled. He had initial input but very little follow up once he was medically stable. If it weren't for a particular professional fighting very hard to get him additional therapeutic support in a language unit (despite not "fitting the criteria" ) he would have been discharged 6 months post-injury.

In general, attitudes to disability are shocking in our society. Why else would so many schools make TAs (often with minimal qualifications and training) responsible for the education of the most vulnerable? It's not just about the system. Disabled people of all ages and abilities come pretty far down the list of just about everybody but those who a) have a disability or b) care for people with disabilities. And yes, work with people who have disabilities too.

Sometimes, trying to find solutions to the problems faced by my clients just leaves my brain in a total fuzz. I wish there really were a straightforward, clear-cut, one size fits all answer but as yet, I don't think there is. Professionals are the least of the problem, in some ways. The curriculum is not very functional for many, not just children and young people with SEN. Employers are inflexible and intolerant of disability. So are most customer-facing staff.

Teachers are part of society too. Some of them are just as intolerant and stupid when it comes to disability. And many of those who really want to help just don't know how to bridge the gap between Johnny (who they were trained to teach, who is achieving at age expected levels) and Sam, who when asked to write an essay on how the breakup of the Ottoman empire led to the Kurdish question in Turkish Politics writes: "they have sheeps".

You know what, I don't know either.

Sometimes it's just hard to work out what to do next. Sam (not his real name, of course!) is now working on extending his sentences and stringing them together in a narrative and talking about his learning instead of being left to write random, unrelated facts that lock him in at the lowest possible level of learning. But is it ideal? Not a hope. Sam and all the other Sams out there deserve more than to be coralled into a classroom and babysat while others develop their knowledge. He deserves an appropriate, individualised curriculum. But sitting in his class, seeing a teacher whose teaching is highly appropriate for 18 out of 24 kids, and seeing that Sam is surrounded by five others on his table with significant but differing learning needs.. it's not always easy to see the solution.

Data? Hmmm. Not sure. I could take time to plan to take fantastic data on his ability to extend his sentences and train the staff to track his progress etc etc but right now, I'd really be happy with his 13 teachers grasping in a sustained way that they need to develop him vs just pitch work at where he is now. I'd be happy with the 5 support staff working with him using some basic, solid strategies to extend his sentences with support in a lesson. I'd like to see him actually have a cat's chance in hell of participating in some sort of meaningful way.

I used to write "programmes". They are a joke. A total and utter joke. To make even the slightest bit of difference to classroom practice in any sort of sustainable way you need to be in there, getting your hands mucky, week in and week out. You need relationships. You need to know the child and the curriculum and how to make one suit the other (preferably working in both directions at once, but there is rarely time).

People say to me as I graft away to get these kids to access the shoddy curriculum: "but what's the point in a student learning about pathogens?. Well, what's the point of any curriculum? It's as much about transmitting a particular set of data/knowledge that are prioritised by a society at any one point in time as anything else. That vocabulary is the key to qualifications which are the key to jobs which are the key to participating in society. The current mainstream curriculum excludes and marginalises people with disability and people who are poor. Kids who don't get it first time are given "differentiated" curricula which keep them at the level they came in on because the curriculum itself is just so hard to adapt that many teachers can't manage. The teachers in one of my schools have tried all sorts to support their students to talk, to explain, to justify.. but they feel ill-equipped.

So, my name is working9while5 and I go to meetings. I observe students in class. I write reports for the LEA. I justify what I do in terms of "speaking and listening levels" and "progression". I waste a lot of time jumping through bureacratic hoops because I have to. I have forgotten to write reports. I sometimes say I will do things and don't. I make too many phonecalls and often not at the right times. And I am often stumped when it comes to solving the problems that I see my students face. Yet I trudge on. I do what I do because I believe these kids deserve a voice. I believe it passionately. I don't know, 100%, how to give it to them yet. One day?

Amen to moondog...

'I used to write "programmes". They are a joke. A total and utter joke. To make even the slightest bit of difference to classroom practice in any sort of sustainable way you need to be in there, getting your hands mucky, week in and week out.'

Yes. Yes, yes, yes, yes yes.

So my ds' proposed ammended statement is due in on Monday. He will 'hopefully' retain what the tribunal ruled and give him 5 hours of direct SALT per academic half term. I know this is a crazy amount compared to many and I know that it will be withdrawn asap (it already has actually but I'm challenging it).

How do I get the most out of it? Do I ammend the statement to say that those direct hours are used IN the classroom to set up communication opportunities and model for staff and the TA? Do SALTs go into classrooms (round here they tend to yank kids out of classrooms for the SALT)?.

Depends on what he needs but I would ideally want at least 2 of those 5 hours to be in class. Perhaps more. But in class has to be in class modelling strategies, not just observing. Bearing in mind that there are practicalities e.g. there will be time when the teacher is talking that you really can't do much unless you have a very specific target related to sitting/listening/attending which isn't very relevant for many of my learners who can do all of this well enough.

What I tend to do in class is go in, watch what's happening for 10 mins or so (I need to get a feel for what the demands are). In this time, I take notes on the demands e.g. the words/language structures being used, any variables that might make a difference ranging from personality dynamics (who's a good peer to use as a model? who should be avoided) to seating on that day etc. The things that make a difference to what can happen next, basically. I will also watch the TA. If they have a strategy in place, are they using it? Does it need tweaking?

When the teachingy "bit" finishes, I go and act as the child's support. I model the strategy/target whatever and see if I can push it on a bit/trouble shoot. With my friend "Sam" this involved a bit of "dynamic assessment" e.g. our old friends trial and error to see what he needed to do to expand his sentence from "they have sheeps" to "The Kurds live in caves in the mountain". My job, in the time I am supporting, is to basically get as much as I possibly can out of the student and the situation, while modelling for the support. When I feel I have "got" something, a little "step forward", I talk this through with the TA and then get her to have a go, then feed back. Then I do it again and get her to "grade" the level of support I am using (on a 1-4 scale) and then we repeat... see if we can reduce the support etc. The aim is to get the student to do as much independently by the end of that short period as they can..

But, saying that, it is messy in class. Sometimes it just doesn't happen. Another kid kicks off, or the material itself has been so dense that just explaining it so the student grasps the concepts takes over. What you lack in class is the ability to alter the variables that much, which reduces your ability to do a test-teach-test format, because often just as you are getting there, the class moves on.

Inevitably, working in class also involves needing to talk to the teacher about things like ensuring there's enough time for the pupil to get to do what they need to do.. but also being mindful of the fact that they do have a whole class to teach... so some indirect is going to be essential for it to work. It makes the world of difference if you have arranged to have termly plans in advance (feasible at primary). Even better is a lesson plan in advance but that isn't feasible all the time and not because the teacher is lazy or apathetic, because they just have quite a lot else to do and there are "side lessons" that arise out of realising that the class lacks certain concepts etc that can't be planned in advance.

However, what I dislike intensely are interventions like that are not translated to the real classroom. There is an approach called "active listening". It is a massive manualised programme with a lot of good in it that teaches children how to recognise that they don't understand and ask clarification.. and it has some good stuff in it with highly structured, controlled activities. However, as good as that is, it's worthless without generalisation as there's a world of difference between following controlled directions to make an origami bat (take a piece of paper. Measure a line.. etc) and coping with that ol' lesson on Kurdistan.

Socially, the same is true. You can practice saying hello/asking for things a million times over in a controlled clinic setting but if you don't do it with real people in real environments, it's not going to transfer.

Your son has a lot of 1:1 on skills via ABA so a lot of what I have to do in terms of academics will be covered.. so arguably the best use of your SALT time is in class/in the yard etc developing a good understanding of the social/language demands of the classroom and developing steps to address issues related to these.

I thought it was 5 hours a week! Ha.. just seen it is once a week. Then I would say class is a priority in your situation. If it was 5 hours a week I would want an even split but if it's once a week, I would say class, class, class all the way.

There needs to be collaboration between your SALT and ABA team. If your SALT can identify e.g. language structures that will "work" for your son in social situations e.g. by facilitating initiations/fading out etc, watching what's happening and commenting on the types of language structures other children use to initiate in his context, your ABA team can work on these individually. Same with the academics - your SALT could give a very good overview of what the crucial key words and concepts to understand and get ahead in the curriculum would be, which your ABA team can work more intensively on.

Working We don't have an ABA team . It's just me now plus ocassional input from a consultant but the LA and school will tolerate no mention of this.