My trust in professionals and the 'system' is disappearing fast

[claw2]

Please tell me some stories of competent professionals you have countered?

From a visit to my GP, after waiting an hour for our appointment, where I asked that ds be prescribed 'sugar free iron medicine' and i double checked it was sugar free and also some vitamins to be the told the iron medication contains vitamins as well. I also double checked this with him too. To be handed syrup iron medication containing not a trace of vitamins in the chemist.

To SALT and school saying they have provided a service to ds, when I know for a fact they haven't and when asked repeatedly for copies and evidence, been ignored.

To Social Services, over riding medical professionals and doing what the hell they want. Again, any formal complaints totally ignored.

Previously OT, no assessments, no therapy, no reports. Who then try to write a report a year later just so they can discharge.

Previous Paed's, being pushed from pillar to post, never seeing the same one twice.

Continence assessments, attending appointment, after appointment providing info and that's it, doing exactly the same thing in 6 months time.

Im just sitting here thinking what a total waste of money and everyones time. Moan over with!

The lack of accountability in the system for what amounts to fairly blatant abuses is at times very scary. I wonder to what degree the criminal justice system could be better utilised in some instances by parents. Would calling the police be more effective sometimes than writing to the LA?

They are not frightened of parents with sharp elbows taking resources away from other children. They are frightened they will take resources away from THEM.

Particularly wrt Direct Payments and imo the reason why a)they are falling over themselves to find reasons not to make them available.

Worse still when they realised their reporting had resulted in a 'referral' to the SS disability team, the team who can actually help ds, they lied and told SS I had declined the referral, despite me putting it in writing to them that I was happy to accept the referral.

2 years later they are very carefully not to make the same mistake twice and report me 3 times to CP, all 3 allegations totally made up and again I have all this in writing, next time I apply for SA.

Despite me having all this writing and making formal complaints and chasing these up several times in writing, I am totally ignored.

Sorry, rant over

Hollow laughter at my LA's "pathfinder" status. Even more hollow laughter at two of the neighboring boroughs being used as examples of good practice in relationship to direct payments.

I desperately want to see published criteria for direct payments made available asap. I consider it to be "the missing link".

Criteria for issuing DPs will no doubt be simply 'If the LA consider it in the best interest of the child and not unnecessary use of the public purse'.

Ha ha ha ha ha!

I was about to say the same as star
OK so the LA don't take parents to tribunal for a named school but for a set amount. What's the bet that that amount will be determined by average state costs and be less than the actual cost especially for Indi ss? So parents can 'choose' to top up to get adequate provision.

Without published criteria the whole direct payments thing will prove to be yet another scam as far as most parents are concerned. The usual suspects will continue to feather their own comfortable nests while telling us they "care" more about our kid's welfare than we do.

My LA is a pathfinder champion and according to its latest return to Mott McDonald www.sendpathfinder.co.uk/ has not awarded any DPs. Discussions are continuing as to what to offer.

If anyone is under any illusion that the new EHE plans will be any different, I have seen a few live EHE plans from different pathfinders that are equally unspecified and unquantified. Some pathfinders even give the total budget on each of these plans, even though nothing is quantified. Of course, I have queried if the budget dictates the needs or the other way round

There's a broad mix of issues to consider.
Incompetence, lack of communication, lack of capacity, and lack of ability in terms of professional failings.

For parents, often unrealistic expectations, lack of commitment to working on something at home, irregular contact with professionals (Did Not Attend rates in clinics atrocious, people not attending reviews or training sessions or drop ins, even if only to air discontent). They also often rely on professionals to do stuff they could frankly sort out themselves in a 10th of the time. Examples would include people demanding a professional source and order a £10 mouse/switch for them, insisting on seeing dieticians when the only issue is that they feed their kids to much, or demanding social groups when they do nothing with them bar parking them in front of a tv.

As I fall into both camps, my advice as always is to attend everything, keep notes of every meeting, and phone call, summarise on paper frequently, do everything asked of you (keep meticulous records) and request data driven evidence.

A colleague was telling me recently school inspectors now ask staff 'So what?' when they are being told of the latest marvellous innovation. That's brusque but useful.
Keep it in your head when someone is telling you about some intervention/group/initiative.

I suppose at this point I was expecting to feel some sense of relief and I don't. Im left feeling a bit bitter, a mistrust of professionals, skint and a single parent.

After 4 years of fighting, ds now has his statement, he has the placement I wanted. I naively thought there would be an end, when in fact its the just beginning and I have a lifetime of fighting ahead of me.

I can take a break for a short time, lift my spirits etc, however this will only ever be temporary, until the next battle commences.

Why do parents have to go through this, just to get what their kids are legally entitled to

Expect very little from anyone, anywhere.
That way, the disappointment is less crushing.
If you have any energy, hold them to account but don't burn out.

Why cant LA/NHS (EP,s, SALT, OT etc) professionals legally have to quantify and specify provision in their reports? instead of leaving it to parents to pay for private professionals to do this. Surely this is a better use of everyones money and time.

(not directed at you specifically Moondog)

Claw It will be better. You won't feel it in the same way that you don't appreciate being well until you are ill, and it will probably take you a year to get settled with your new arrangements which will also be hard because there is nothing like having your child's needs properly defined and resources put in place for them - to give you the luxury to reflect that 'shit, my child has a lot of needs - gutted'.

And then it will probably take you another year or two to simply come down from the adrenaline, possibly into depression or a form of PTSD that wipes your spirit for a while. And you also haven't a clue what to do with your time so you spend too much time wallowing in bitterness and it takes time to find yourself and the community you want to become a part of again.

That's my experience anyway.

Gosh, didn't think it was but well understand your anger.

If they do so, how do they divide a certain amount of hours (maybe 25-30 a week) between about 100 plus kids? You can see the maths is tricky.

Most kids don't need 1:1 input. They need those who are with them all day, every day to be trained up to help them.
That takes time, and competence in training.

All of the hundred odd kids will have different problems and be in different geographical areas.

Professionals don't quantify and specify because there is a clause in the COP that says they must UNLESS it is in the interest of the child not to.

Most LA's want to give this clause a try because not all parents will try and hold them to account for it, and if they have to defend it in tribunal they can attempt to.

It's a systemic issue.
If there was a basic level of competence and accountability, you would not need layer upon layer of consultants and therapists and outside professionals.

Also, kids with SEN struggle often in m/s and the teachers struggle with them.

Special schools for the past 20 years have been very much about having a lovely time, which means lots of lolling about in ball pools and padded cells sensory rooms.
Cue bored kids and bored staff and all the problems that entails.

I think things are changing though.
Increased expectations of value for money, accountability and measurable outcomes and increased status for SEN teachers.

Probably not changing fast enough for individual families though.

It's all a massive lottery.
You can have brilliant brilliant people and in the next class/school, someone doing the same job who is not fit to look after a hamster, let alone a vulnerable child.

Thanks Moondog, I was thinking with regard to the SA process, rather than general assessment.

For example EP assesses as part of the SA process, she/he quantifies and specifies provision. It is then much clearer to everyone involved whether that child needs a statement or not and if they do exactly what needs to be written in that statement or NIL if they don't need.

Although parents might not always agree with that EP has written and might need to duplicate anyway. Seen as LA EP is assessing as part of the process, why not quantify and specify?

Star if they don't quantify and specify, they should then have to explain how that is in the best interests of the child in their report.

Yes Claw. If only WE ran the LA eh?

Ah but you see, the inherent weakness is that the SEN industry involves people trying to tell other people who are from different agencies/departments what to do.

1. People don't like being told what to do by other people.
2. Those telling others what to do aren't really sure themselves what needs to be done exactly, so everyone covers their backs by giving vague recommendation to others and then hoping everyone buggers off and leaves them alone.

My view is that if I am recommending a course of action to others, then it is my responsibility to hang about and make sure they know exactly what I want them to do and why. I commit to helping them through that process. Most then respond magnificently. They are grateful for the coaching and specific guidance and are then empowered to be main agents of change.

OK. Competent professional story.

DS sees ENT Consultant.

Consultant says 'Well, I believe he will benefit from Grommets. However under the current policy and criteria he wouldn't get accepted. Would you like to see a copy?'

Me: Yes please.

Consultant: So you see, if I could show any evidence of any of these I could refer him, but the evidence isn't there at the moment.

Me: But you agree that his hearing fluctuates?

Consultant: Yes

Me: And you are aware that he is currently costing the tax payer £38k in fees for a Specialist Speech and language school where he is receiving daily Communication Therapy?

Consultant: Oh, no I didn't.

Me: Wouldn't it be a good idea if he could hear his very expensive therapist? Or will he have to repeat these expensive years?

Consultant: Yes. Good point. I'll make a referral and put that in it.

DS had grommets put in 2 WEEKS later.

Sorry have to dash, thanks for replying, will have a read later.

moondog - DS2 has has multiple SALT assessments and the school have been sent resources. However the wording of the report is so vague that the staff do not know what to do and so the provision given for delayed narrative skills of half chronological age was to listen to him read for 10 mins a day (TA).

I spoke to the SALT who then went into the school to provide training for the TA to implement her programme. This is then translated into one short term target for the IEP which he repeats ad infinitum until the SALT reviews once a term. Waste of time.

Sounds it.

Okay. Not sure if competent professional or not.

But ds' SALT after we lost the tribunal said in a TAC meeting once I told her report described him very well but was completely absent of any suggestions what to do about it replied 'That's because I don't KNOW what to do about it'.

She was restricted by the stupid behaviour of others who were sent into to any meeting we had half way through to 'remind you that SALT is a very busy person who has other children on her case' for which said SALT apologised and put and end to after the second time, as well as the school never passing on my messages or emails to her.

I had an open invitation to every 1:1 SALT session and was asked for comments. A couple of times I made suggestions which helped but tbh, she was just so far off the mark that I didn't really know where to start and was just so grateful to be in a room with a professional who regardless of her feelings towards me didn't throw her weight around or make it clear that I was nothing more than poo on her shoe. I didn't feel under those circumstances I 'could'.

The previous LA EP told me that aba was only for very little children and then went on and recommended that school used ABC for behaviour management with ds. She also taught TA how to use precision teaching to teach ds. Of course when I asked if she could just run through how to do PT, she declined, although she covered her back by writing in her email to school that of course she'd teach any parent interested (discovered that later via SAR).

Also, when out of courtesy I informed her that I was getting an independent Ed Pscyh report, she promptly emailed SENO and SENO's manager to inform them and recommended that in all dealings with us, to keep that in mind - no mention of doing anything to help ds, nor anything ds's interest.

Even the Autism Outreach teacher whom I got along with tried to get me to do what the LA wanted, in ds's interest but later admitted that I was right to ignore her 'advice', as did the LA officer.

And they wonder why we don't trust them...