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???

I've read your post properly now working thank you. Okay, I'll try and get 4/5 of the time specified as 'in class' time. He's only nursery age so the structured and academic stuff is not really there yet so there are ample opportunities for setting up social things. Perhaps I'll even specifity that the SLT should do this during child initiated learning (playtime). I don't want to be restrictive, but there is no point in her coming in every Wendesday morning at 9:30 when this is when he does yoga.

Another question (sorry for going off topic Lougle) I don't suppose it SHOULD matter, but in reality should I be asking for a SLT with a specialistm in ASD?

It's hard to specify exact times, Star, as obviously there are only so many hours in a day and caseload demands tend to be high. Even our community feeding specialists, whose whole job it is to assess eating, struggle to manage exact lunchtimes/dinner times for caseloads and sometimes ask families to delay food to facilitate an assessment.

In nursery, the time will be very well spent ensuring that the staff who work with your ds a) can set up a communicative situation appropriately
and b) understand his communication cues and can appropriately facilitate e.g. a communication temptation at the right time. This will involve training them to find those "teachable moments" as well as carrying out a set of "activities".

Yes, I take your point. However, ds' nursery actually changed their Social skills class to another day as it was the only time that the OT could do and obviously with a dx of ASD, missing the social skills class would have been daft, - so not so much that the SLT has to work crazy times, but that the whole team have to work together to make sure that the therapy occurs when it can be effective iyswim.

I dunno. They might not even give us back our weekly SLT. We only got it through tribunal, and only then because the nursery he attends has a SLT base attached, the next school does not.

To go back to the original topic, I have been lurking. I am a healthcare professional too but don't usually post here as I don't mention my profession online as I worry details revealed elsewhere would out me.

I just wanted to say that I do wish there wouldn't be bashing of special schools and sensory rooms and child-directed therapy for all.

I work with children who have neurodegenerative disorders. They are mainly nonverbal with profound and multiple learning disabilities. Some of them literally have months to live.

I know they may be expensive etc but there are children who deserve to just enjoy the time they have on this earth. Some of them experience unimaginable pain .

Moondog, I appreciate your passion for your cause but I do find some of what you say about how there is no disability, just poor teaching, very hard to stomach. Teaching won't cure the children I work with. It won't return sight, or hearing.

I appreciate the need for action from parents and on the whole it is an excellent idea. A little more understanding that there is a range of disability and that making a child laugh and enjoy their day has a place too.

'I know they may be expensive etc but there are children who deserve to just enjoy the time they have on this earth'

I absolutely agree with this, but I wonder how it is possible to enjoy freedom without instructional control.

You can't let a child out of thier buggy for instance if they haven't learned to STOP when you say so on an outing. I also think that giving a child the best possibly opportunity to express themselves to enable them to direct and have control over their final days is important. I don't see giving up on their education simply because they might not reach the end of it as acceptable.

I completely agree - asdp sensory rooms and play therapy are worth every penny for children who benefit so it is all a question of getting the balance right for each child. But I raised the issue of the expense of my son's school which does not have any children in the category you describe, all are healthy and verbal yet do not get an education that will enable to communicate or participate - at whatever level that might be. I certainly don't expect teaching to take the disability away but I would expect that it would raise expectations a little higher than trips to supermarkets and soft play - all of which we do as a family anyway. It may just be me but the emphasis on making ds happy always makes me feel they think we keep him chained in a cellar and that he depends on them to bring a little sunshine into his life.

aslightlydifferentperspective

I completely agree.
unfortunately for me "dolfrog" has been my internet name now for over 10 years and when using network systems such as Facebook I have to use my real name and it it never too long before some make the connection.
I have a clinically diagnosed disability, which causes many communication problems, which if not understood by teaching professionals who use their own communication preferences to teach, can also cause real problems in the education system. So if teachers are not first aware of the existance of these disabilities (poor teaching training standards), they are not able to adapt their teaching style and methods to adapt to the various disabilities children may present in the classroom.
I have found that those who advocate for a single program and blame poor teaching tend to have a hidden financial agenda, to promote a particular program to increase sales, or the provision of the service they have been trained to and are licensed to provide. The UK dyslexia and phonics industries has been doing this for years, it is a proven marketing technique.

Unfortunately the varying communication and education needs of all our children go ignored, and they are forced to use communication and teaching programs which are most inappropriate for their needs, and do not begin to meet their communication needs.

There will be children with neurodegenerative disorders who instructional control is just not an issue for. Some of these children really have very limited mobility e.g. unable to turn their heads etc. As time goes on, they may have very limited ability to respond even perceptually to stimuli e.g. they may sense the world as a neonate might. You can't really "do" instructional control with a newborn.. and I hesitate in drawing that comparison but we are talking about something profound and multiple that is terminal, here.

I don't think aslightlydifferentperspective was denying anyone their right to fight for the best education for their child, just pointing out that rubbishing of sensory rooms etc might not be applicable for all?

There is a decreasing pot of money, that is a fact. I may keep my job this year but it is likely to be watered down e.g. instead of three sessions in a specialist unit, I will have one. Two years ago it was five. It is happening. Jobs are being lost. Initiatives being curtailed. And before anyone says it, the statements are quantified. But the LEA have ceased to issue them so the units are dying a death. Most of our population (urban socioeconomically deprived) just don't have the skills to fight it.

None of that would stop me fighting tooth and nail for my child, and here's the horrible thing, that a parent on the last ABA programme I worked with pointed out to me: if everyone was "sharp elbowed" there would be no way of increasing provision when local provision failed. This mum felt the only chance she had was the apathy of parents who were either ill-equipped or ill-motivated because realistically, in her eyes, it was not in her interests for everyone to raise an outcry as it would lead to watered down and expensive provision for all instead of giving her leverage for a curriculum she could "own" and design with top-class consultants from the States. This was the view the local ABA supervisor held too.. she said they would never work for the LEA because they wouldn't want to be subject to the bureaucracy or be expected to fall in line with policies or procedures they didn't agree with, including - and this were her words - "time consuming activities like being involved in a CAF". They also wanted to reserve the right to walk away from any programme where parents didn't follow their practices or follow alternate therapies like GF/CF or sensory integration. I understand her thinking entirely but those of us in the public sector don't have the option to avoid activities we think are pointless, they are mandated so we have to find time for them or risk losing our jobs.

I think it is right and proper to challenge the system and the professionals but if you want to truly change thing and truly make a huge, huge difference you have to understand the workings of the system and move beyond thinking it's just general laziness and apathy that prevents a therapist/other professional from just saying yes to even reasonable demands.

I think you are right that there are some ABA folk who feel like that, want to pull the ladder up after saving themselves, so to speak. That's why I want to fight to get the best of ABA into our schools, so it's not just the sharpest elbows which win. And yes, take your point about the very disabled getting huge enjoyment out of sensory rooms.

'Moondog, I appreciate your passion for your cause but I do find some of what you say about how there is no disability, just poor teaching, very hard to stomach. Teaching won't cure the children I work with. It won't return sight, or hearing.'

Eh??
Slightly, do you think I am saying that all disabilities are due to people being poor teachers?

electra

unfortunately we all vote for the government we want. And if we do not ensure that the funding of education and more specifically Special Education provision is enshrined as we want in any parties manifesto.
We need to lobby these politicians until our needs are included in their election manifestos, otherwise when they get into power our special educational needs are well down if not off their agendas. Which is why some LEAS have not spent the funds they used to have in the past, ans why there is a lack of funds now.
All parties have the rights to education in their rhetoric, but very few are willing to pay the high financial costs for that provision, they usually have many issues which they claim to have a higher priority.

moondog

you do not like to consider some disabilities even exist if they conflict with your own agenda

'but if you want to truly change thing and truly make a huge, huge difference you have to understand the workings of the system and move beyond thinking it's just general laziness and apathy that prevents a therapist/other professional from just saying yes to even reasonable demands'

Yes. I hope this will be what our group can achieve. We all know that the individuals who are failing our children aren't doing it deliberately (at least that isn't how they start out) and that their pointless and ineffective practises are what they are PAID to do, what their contract states and what their line managers expect. Challenging what they have come to believe as right, what they have arranged for themselves as convenient and their own job satisfaction is not going to go down well and has to be done with care, but challenge is still needed and parents need to be listened to as a group rather than whinging individuals that are judged for being pushy, financially advantaged, in denial, deluded etc etc.

My career for 15 years was (and arguably still as I am on a career break although unlikely to return) either in or in close liaison with, Local Authorities and mostly Children's Services. I hope that perspective will help an accountability group. A few of the others who have expressed an interest have careers also have experience of working in or with public bodies. They're really not as misunderstood as it might come across on here when anger can fuel the posts.

Electra, I suppose my point relates to the other thread really, where what was being discussed was setting up an advocacy group for outcomes and accountability in professions.. if you have a group like that, the wider context is very relevant. I am not saying all parents should take on the government, though some do.

The law allows more than what is in the budget sometimes. The law specifically allows for any child to have whatever they need, limitlessly. We are specifically mandated to say what a child needs, not what resources are available. The LEAs don't have a limitless budget so it is not in their interest to quantify what a child needs so in some areas, as in mine, it becomes watered down in the transfer from professional report to statement. I have recently proposed an alteration to a statement for a student as some new issues arose that I wanted recorded for the safety of his provision. But the SEN Officer wouldn't allow a change. He represented his reasons why the change wasn't necessary to the parents who agreed. I made my case for why I felt it was necessary but the parents believed he was being genuine. I can't accuse him of lying. So there you go.

Personally, I think the majority of kids with significant SLCN should have about 3-5 hours of SALT a week, to comprise individual sessions and push-in support in class. However, when I write a statement I am not allowed to say this, despite the law. As there is insufficient evidence to prove that my clinical belief has any basis, I'm not allowed to say it (my reports are signed off by a senior manager). I'm not allowed to name a specific provision. I can only write waffle, which I can try to quantify, but it remains as waffle. The bandings for the language units are determined by the regional managers who also keep them waffly.

Seriously, the professionals are, well, only the messengers of national and social policy that encourages deceit and illegality in the treatment of children and young people with SEN. I have pretty much destroyed my own career in trying to deal with this internally combatively - I will never progress in the department I'm in because I have raised these issues time and time again and am seen as a "troublemaker" for doing so.

Yet I guarantee you, out there somewhere are many parents who could stand up and say I did sod all for their child and they'd be right. The ones who got a diagnosis and half a page of recommendation as per "the pathway". If you're here, any of you, I am sorry. It's not what I would want for your child and I chose to give up that side of my work because I didn't want to be put in a position of being so ineffectual.

A colleague and I rant about this all the time - we say "a report is not a service". I just don't know the answer.

What agenda Dolfrog?

I already cited my interest in the things you and Indigo discuss.
I will be discussinig APD weith members of ASHA in great detail when I am in the States with work in a few weeks, thanks to what you have told me.

I've alos been in touch with another colleague about AIT.

Thanks for the info you gave me by the way.

"Challenging what they have come to believe as right, what they have arranged for themselves as convenient and their own job satisfaction is not going to go down well and has to be done with care, but challenge is still needed and parents need to be listened to as a group rather than whinging individuals that are judged for being pushy, financially advantaged, in denial, deluded etc etc."

I agree but I think what you underestimate is how many of us "at the coal face" actually don't find our jobs satisfying or believe that the systems are right.

There are 30-50 therapists in my team. There are the newbies, who are terribly keen, and are Believers. Then about 2-5 years out of university, there are the Disillusioned, who know perfectly well that it's all (in the words of my good friend ) "bobbins" who are just miserable about being caught up in it but see nowhere else to go. Then there are the Specialists. I can think of about, oh, 3 of them who have deluded themselves into believing they offer any sort of quality provision. Everyone else knows they are fighting against the tide. And then the Managers. What can I say? There are currently ongoing negotations again about our units for ASD/SLI. The manager who is negotiating refuses to consult with us about it until after they are done. I may not have a job - again. Sigh.

I know who I think needs to be made most accountable

I chose the job I have now because I felt I could do the least damage there! I am not alone.

In fact, if you could somehow get it into the law that professionals would be allowed to challenge other professionals openly in front of parents without getting a bollocking/disciplinary for failing to tow the party line their "lack of professionalism" etc, that would be a great start

I have never found any of the posters on the SN boards "smug2 or "unrealistic" tbh....

I am a newbie the board and without it, and the advice/help/symapthy I have received have meant I am not totally alone in getting help for my ds1.