Autism Advisory refuse to work with parents because......

[StarlightWonderStarlightBright]

their support is to the schools.

How do I tackle this one.

They don't work with parents because they support the school. If parents want to know what their advice and strategies are they should speak to the school.

I have requested that I am liaised with when forming strategies and recommendations as I have a wealth of knowledge about ds, and also so I can support their work.

I have asked for this to be done through a weekly 'log' with 5 headings. All other services have agreed to this and after almost half a term have fed back to me that they like the system and find the feedback from the parents helpful, as well as the opportunity to correct or challenge one of my suggests to improve it.

The autism outreach spend 3 hours a week in ds' nusery and says filling in this form will detract from hands-on time. The SLT spends just 30mins a week with ds yet still manages it (in fact she's got so enthusiastic about the form she fills it in and then continues on the other side).

But the autism lot still refuse any direct liaison with parents. The say that isn't how they work.

My argument of course is that the way the work should be in the best interest of ds, not their preferred methodology, but I'm told that is tough.

DS' statement says that their service will support the school, but it doesn't say that this should be done without parental involvement.

Any clues/ideas?

Agnes They don't do hands on. They consider 'supporting the school' to be hands on, although quite what 'supporting the school' is is quite beyond me. The school don't even know.

On direct questioning of the TA of what the autism advisory service does when they come she replied 'it's hard to say, we kind of pick it up by osmosis!'

So there you go!

You wanna see my email?

Have to de-ds it first!

Dear Autism Advisory Teacher,

I understand that you are visiting Sam in Tolsdales Nursery on Monday. I understand too that you will be writing a report which contains a section for parental views. Unfortunately I am unable to attend on Monday due to the short notice. However, I have written below our views for that section.

Kind regards,

Parental Views:

Sam has been attending Tolsdale Nursery for a school term and we are extremely disappointed at the lack of progress so far. We had requested from the school and had agreed that professionals would complete a simple communication log so that information could be shared between the professionals and the parents in a timely way to ensure integrated practice, transparancy, immediate feedback and communication and to enable other professionals on the team and parents to input into the advice and strategies, as well as to learn from them. We were hopeful that this would have ensured that Sam would continue to progress at a rate faster than his peers as he was doing prior to entering Tolsdale Nursery. We were alarmed therefore to discover that whilst all other services have agreed to complete the log and enable parental feedback on a weekly basis, your service has refused.

In addition to getting information far too late to be of any use to us, or too late to feed into strategies as experts on Sam, the information contained in the reports does not specify what strategies have been recommended. The wording is often no more helpful than 'encourage Sam to', without specifying how. I'm certain that the teachers and Sam' 1:1 are very well aware of what Sam needs to 'do' as are we as his parents, it is the 'how' that represents the autism specific support and that is not shared in the reports.

The fortnightly reports contain targets based on seemingly arbitrary criteria, again with no involvement of us, Sam' parents. No rationale has been given and it is quite concerning to see that no account has been taken of Sam' substantial prior learning. From what we know about Sam, if low expectations are made of him he performs badly. It does not appear that your service has acknowledged this, but it is not surprising given your refusal to work with us on strategies and setting Sam' targets. Further, these targets are not SMART and it is unclear how you are planning to measure his progress against them. Managing the daily routine in a classroom is not something Sam has ever had much trouble with, given his strong imitation skills and the low demands of this age-group in general. This was shown in his unsupported placement during his time in wraparound care at Little Tops. We would have expected by now, as a result of Sam' attendance at nursery, a substantial increase in his social communication skills with his peers but have not seen any programme or detailed strategy for achieving this, nor have we seen anything like the progress we know Sam is capable of.

In short, the support provided for Sam is not integrated with his other provision, including that provided by his parents and it is not evidence-based nor is it building on his prior learning. Given that outcomes for children are greater when services and parents do work together using evidence-based practice it is no surprise that your service is unable to demonstrate any progress that Sam has made.

In addition, strategies and advice have been given to the school by your team without any liaison with the parents despite repeated requests to be involved and an agreement by the school before Sam started, that a central communication log (with suggested headings) would be kept for this purpose. A requirement in his Statement of SEN is that parents are involved in all aspects of Sam? educational provision. As this requirement has not been met by your service we consider this a failure to comply with Sam' Statement of educational needs.

That targets were set for Sam without involvement of his parents, the refusal of your service to liase with parents and other service providers enabling them to feed into the strategies and benefit from them, your inability to focus on outcomes and measurable progress and preference for concentraing simply on provision regardless of impact and your refusal to seek out and take account of prior assessment and learning goes against Ofsteds Disability Review recommendation 16 as well as points 104 and133.

It also goes against

• sections 1.13, 1.15, 1.24 and 2.10 of the Practice Guildance for the Early Years Foundation Stage
• sections 1:1 and most of chapter 3 of Removing Barriers to Achievement: The Governments strategy for SEN,
• Standards C4, C8, C9, C34, C35, C37, Q5, Q8, Q25 and Q32 , and of the Professional Standards for Teachers
• 1.5, 1.8, and section 5 of the General Teaching Council's Code of Conduct and Practice for registered Teachers
• recommendation 4 of the National Autism Plan for Children
• sections 2.23, 6.20, 6.27 and 7.28 of Early Intervention: Securing Good Outcomes for All Children and Young People
• Sections 2.5 and 3.6 of Autism Spectrum Disorders: Good Practice Guidance 1
• pointer 3, section 4, behaviour 1, school provision 6 of Autistic Spectrum Disorders: Good Practice Guidance 2
• Chapter 3, sections 6, 13 and 14, Chapter 4, sections 27, 31 and 47 and Chapter 5 of Breaking the Link between Special Educational Needs and Low Attainment: Everyone's Business
• Standards 1, 2, 3, 4 and 15 of the Quality Standards for Special Educational Needs Support and Outreach Services
• Recommendations 4, 8, 14 and sections 2.4, 2.12, 2.20, 2.31, 2.59, 3.5, 4.15 and 5.1 of the Lamb Inquiry
• section 3 of the SEN Toolkit 3
• sections 2.1, 2.2, 2.6, 2.7, 4.6, 10.1, 10.3, 10.4, 10.5 of the SEN Code of Practice
• sections 1.24, 3.17, 3.48, of the Bercow Report
• a substantial amount of the Inclusion Development Programme: Supporting Children on the Autism Spectrum: Guidance for Practitioners in the Early Years Foundation Stage,

As above, all recently published policy and guidance documents indicate that outcomes for children and young people have consistently been shown to be much improved when parents are involved in the important decisions regarding their children?s education and see themselves as equal partners.

Further, the embedded culture of low expectations, demonstrated by:

1. Autism Advisory Teacher's comment that 'Sam' autism would not go away', as justifcation for poor progress (this was said in response to my expressed disappointment that by her first visit I had seen no difference in Sam)

2. The TA's comment that the gap between Sam and his peers will widen as he has autism (an assumption on her part that has not been corrected by your service in its support of the school)

goes against points 54, 130 and 152 of Ofsted's Disability Review, contravenes Standard Q1 of the Professional Standards for Teachers, Chapter 3, sections 6 and 14, Chapter 4, section 47 and Chapter 5 of sections Breaking the Link between Special Educational Needs and Low Attainment: Everyone's Business, section 2.23 of the Lamb Inquiry.

The fact that the targets given by your service are not SMART, and appear to target skills that Sam has already acquired, suggests that Sam? 18.5 hours of additional weekly professional support is not adding value to his learning and is a waste of the public purse. Sam? targets and strategies suggested by your team have been set with no consideration given to his prior learning, and no rationale has been provided for what targets have been set or from what baseline. Nevertheless your service is well aware that the parents have almost a year's worth of evidence of both formative and summative assessments.

Assessments of Sam? prior learning to starting at Tolsdale?s, show him to have been progressing at a pace faster than his peers in ALL skill areas according to National Standards, including social development (despite having limited access to his peers). This progress was made with a similar no. of hours of professional time a week (18.5 hours) that he is receiving now. It is therefore alarming to see that the targets he is supposed to be working to demonstrate expectations that Sam will fall further behind his peers, rather than continue to catch them up. Since his diagnosis and parent-resourced intervention, he hasn?t fallen behind his peers until now.

We respectfully request that your service look at the evidence, and use this as a basis for forward planning for Sam. If Sam is not demonstrating skills in his nursery setting that he has generalised into other environments, the reason for this anomaly needs to be urgently investigated. We are keen, as we have always been, to work closely with the Autism Advisory Service to ensure that Sam undergoes his transition from the home learning to school learning setting in a planned way and we welcome the opportunity to share our knowledge. We do not believe that arbritary targets set in secret without parental involvement are likely to achieve this outcome, nor that they are in Sam? best interest, as supported by the numerous documents cited above.

We would like it to be noted here that we have made regular requests to establish a system of working that will enable services (Local Authority, NHS, Independent and Parental) to improve outcomes for Sam in line with the many reports and documented good practice cited above. We are alarmed that your service, through refusal to work with us, share information and welcome our participation has failed to allow the continuation of the gains Sam had made prior to starting at Tolsdales and has wasted the provision specified in Sam' statement. However, as always we work to outcomes as is widely recommended and respectfully request that your service works alongside us with this.

Blimey, - didn't realise it was that long

Great e-mail Star. What was their response - one line?

Yes, there response is, 'lets have a meeting so we can explain to you the role of our service'!

I wrote back that I would prefer to have a meeting about how their service could meet ds' needs!

You couldn't make it up could you?
I'd like to say it's unbelievable really but sadly there are too many 'unhelpful' professionals around. Keep fighting Star that's all I can say.

Well I agreed to the meeting, but have asked that we record it. They have refused. They said they had sought legal advice.

How on EARTH can the recording of a meeting between an autism support service and a parent be a legal matter?

Unless, as I suspect, they are up to their usual tricks of requesting a meeting for the sole purpose of writing made-up minutes to contrive to create evidence where there is none, which of course is why I have asked to record it, and I presume, why they have refused. (when I take someone with me they only ever add parents minutes at the end as an appendix because they aren't 'professiona' minutes, they are just parents opinions apparently).

I have no doubt I will be flamed for this and I have namechanged but just to give you some perspective.

I work for a LA I am one of the "profesionals" that so many on this board like to bitch about.

My reaction on receiving an email like this would be "Yes dear" and then I would pass it on for someone else to deal with. I have a case load of hundreds of children I am not going to spend an hour replying to a rant by a parent in fact I am likely to put more effort into those children who don't have parents who think they can dictate how I do my job.

I have professional responsibilities within my role and they include a certain amount of paperwork. I am not going to start doing additional paperwork on one child because their parent has told me to. If you don't like the service that is offered you don't have to take it. If you are such an expert then I would be wondering why you don't home ed as you obviously judge your own skills and knowledge as so superior to that of everbody else.

I do the best I can for the students and schools I deal with and I am well aware that my service is not exactly what every parent and/or school wants but it is my job and that is all, not my life. I know it is your life but you have one child to think about I have hundreds so don't try and dictate how I do my job because I can tell you now it won't have apositve impact.

You went to tribunal and you lost, you seem to believe that everyonr has to bend over backwards at the expense of others to give you exactly what you want. If you want to get everything your way then you need to home ed.

Pro, you are posting in an extremely inappropriate fashion in an extremely inappropriate place.

A bit cowardly to name change professional but I respect your view (if not your method).

I don't expect 'people' to change the way they do things for me. I expect people to deliver a service that they are saying they are and to do right by ALL their clients/customers etc. I expect them to use the resources at their disposal to work efficiently and effectively and to recognise that outcomes are improved for children when they do so.

I am lucky enough to have met 'professionals' who would do this, who DO do this, just sadly not in my ds' case. I can see how easy it can be to achieve and I have seen the benefits for all. I am not asking for additional input, if anything less but more targetted/focussed and more responsibility myself for achieving the outcomes. This is why I carry on. Because I know that it is possible.

I am not asking for anything special. I am trying to hold them to account to what they SAY they are doing, but not.

'yes dear' it may be but that is not good enough, not for my ds, not for me and not for the tax payer.

professional1 - how patronising

But enough of the defence professional. Perhaps you can tell me what you would do in my position, with a ds who with the right input has the potential from needing very little support in a couple of years (said our EP regarding his progress so far), but who is currently on a path of needing life-long intervention due to the lack of focus or indeed impact of the intervention currently received.

What would you do?

professiona1 Have you run away or are you just thinking about it?

The thing is, these professionals that we 'bitch' about.....many of them post here in support.

WRT taking the service, I'm afraid I DO have to as is explained below. In terms of home-edding, that was exactly what I tried to get agreed at tribunal or at least get ds some provision that would meet his needs. The thing is, this service managed to convince the tribunal panel that they could do as good a job, and they are not doing.

But the really daft thing is, they probably could if they followed their own policies (the ones shown to the tribunal btw).

Arse - typed long response that disappeared. Will retype

In truth I think you need to HE. You are fighting a losing battle and I would stop with all the quoting of COP and guidance etc etc it doesn't intimidate many HTs or LAs. It may be the case that these are things that should happen but in reality little is that enorceable. Some of the "good" or "outstanding" schools I work with are shocking wrt SENs and SNs and the heads will continue to get away with it as there is no comeback despite what you might like to think. When was the last time you saw an actual "punishment" of a HT or LA for not complying with the COP and statutory requirements, doesn't happen. Not saying it's right but it is the case much of the time

You have a fundamentally different view from the Autism Advisory Service on what approach your son needs and as a result you are always going to disagree. You either need to HE or move somewhere with a LA more sympathetic to your viewpoint. If I wanted academically selective education for my child i have three options a)move to a grammar area b) pay for independent education c)put my child in a comprehensive school and then constantly battle for them to provide something that is in conflict with their ethos? Can you see how c) is never going to work?

I am not saying they are comparable situations but it is more of an illustration.

You and many others have a view that ABA is the best approach, there are other viewpoints and although you may not agree they are obviously prevalent in your LA.

I do my best for the kids I work with and I will bend over backwards to help them and their families. But I will work harder for someone who I feel is working with me not against me and who doesn't feel I somehow owe them simply because I am employed by the state.

professional

'It may be the case that these are things that should happen but in reality little is that enorceable.......heads will continue to get away with it as there is no comeback despite what you might like to think'

Thank you. Yes I know this really. If it was about right and wrong and justice we would have won the tribunal. I was advised not to appeal even though we had a good chance of winning simply because the LA would illegally remove all provision 'pending' the outcome of the appeal and ds would be yet further behind.

'You have a fundamentally different view from the Autism Advisory Service on what approach your son needs and as a result you are always going to disagree'

Now this is kind of interesting. Because I don't think my view of the approach my ds needs are any different from what they SAY they are doing and what government policies and guidelines and good practice say they SHOULD be doing.

This isn't about ABA, although I do believe that it is because we have done ABA and preferred it for the early years of our ds' education that has led to us being sidelined from our ds' education now.

It is frustating to hear time after time how ds needs to 'generalise' things now he is at school, as if he didn't before, that his drawings are 'formulaic' as if we had taught him to draw like a robot, that he is a visual learner because he has autism when we know he is not, and having no system to bust these assumptions and myths they have created for themselves to justify allowing him to get lost in an environment with no direction or demands where his confusion and eventual frustration will be written off as simply because he is disabled rather than because they have abandoned him to his disability.

Now this happens across the country as children with disabilities get less and less support, but ds has enough written in his statement for this year only (most likely) for it to NOT happen to him, the result of which can make the difference to whether he goes on to cope in mainstream or not.

Home-edding won't help this because the most important thing at this particular stage for him is access to a peer group to learn the skills of shared imaginary play etc in particular. We are currently selling our house due to our tribunal costs and for having had to fund the ABA programme so we have no spare cash for a private school (which are often over £100k) so our ONLY option, however painful, is to try to make the most/best of what we have.

'I do my best for the kids I work with and I will bend over backwards to help them and their families.'

That's great. And I genuinely believe that most of the people on the ground do too, but something happens when they get higher up and into a more political, financially strained position with an little empire and budget to protect.

'But I will work harder for someone who I feel is working with me'

Absolutely, but then it sounds like you care whether someone is working with you. I am in a situation where there is absolute refusal to work with me, or take account of any prior learning, good practice. Complete disinterest and disdain for what ds has achieved so far.

'not against me and who doesn't feel I somehow owe them simply because I am employed by the state.'

This is unfair actually. I am not working against anyone. How could I when I haven't got a clue what they are doing? The now agressive (I have not always been like this if you look at my earlier posts) position I have taken is through frustration and not being 'allowed' to work with them.

I don't feel anyone owes me anything for being employed by the state, but I genuinely do wonder what the POINT of this service is given that ds has been withing their clutches for a term now and made no measurable progress. The public purse comment is purely in response to the much quoted (by them) idea that ABA was a waste of the public purse. Well that is open to interpretation and is actually quite a complex issue. However, at least ABA made a measurable difference.

Also I forgot to say. DS does have an excellent and caring class teacher, great TA and a 'fairly mad SLT' (who is more enthusiastic than me at having to filling in my short form) as well as a good OT which would be provision he would lose too if we pulled him out.

Oh, professional, please don't patronise Star. I, too, am a professional, but while I agree that this might put my back up if I received it, I would also think the child lucky to have such a caring mother who was willing to work with me. I'd also assume that they knew what they were talking about and use that - given that star so clearly knows her son better than anyone.

So, while it would put my back up, it would make me look at my methods. It's no excuse to say 'well, I have a big caseload'. We have to do our best for every child we work with.

Also, as a parent of a Statemented child, the only way I have ever got anywhere with anyone is to quote legal shite at them, or bits of Codes of Practice. It is the don't-bullshit-me badge of honour and I suspect you don't have a child with SN if you find it pointless to quote the CoP!

This is also quite offensive: "you seem to believe that everyonr has to bend over backwards at the expense of others to give you exactly what you want. If you want to get everything your way then you need to home ed." It's not about Star getting what she wants. It's about her son's needs being met and having his needs met his way, not lumped into an 'all autistic people like visual timetables' tickbox. Disabled/ SEN children have a right to have their needs met - why the hell should she have to HE for that to happen?

I think the basis of what is being asked for is not unreasonable, tbh, and you don't seem to have enough experience in this area to comment usefully.

Star - am impressed as always with your letter.

To be fair to professional that is esactly what I think the 'professionals' think of me. And the threat of tribunal seems to make everyone accommodate and listen to me when I express a view on what ds should be getting.

I have thought of home-ed and but worry about social skills and group work. Am gathering information about what services I will be able to access if I home-ed - will I get OT and SALT?

""doesn't feel I somehow owe them simply because I am employed by the state""

But at the end of the day we as tax payers do employ you and if there were no disabled children you would not have a job. So you do 'owe' us - you 'owe' us the time and expertise we are paying for and which you hold yourself out as having. Our DC's are your clients. Your duty is to them not to the State and this is where the problem lies as I see it in that rather than the paternalism I got from the NHS, once the LEA became involved all I got was hassle and they had a negative effect. They made us feel guilty for being a drain on their resources. I cannot imaging a hospital making a family feel bad for their child having cancer even though this costs more to treat. Yet in Councils these views seemed ingrained.

Outreach teachers should be accountable in the same way as doctors, nurses and other professions. Star has only got to these point because of immense frustration.

The outreach service went to tribunal against Star's ABA (which was a modest package) and made promises that they could achieve the same outcome for even less money. Now they are failing her child. They are not delivering what they said they would. We had the same situation. Our children will never get this time back thats why its such a big deal. Its not about different approaches its about good progress and no progress.

Also it should not be at anyone else's expense for this outreach teacher to do her job. She spends sufficient time with Star's DS to be able to make a difference and whichever form she fills in it should be clear what programmes she is doing and outcomes based. Parents should be able to understand what is being taught and why and to be able follow up at home. every teacher has to fill out a lesson plan why are outreach teachers so different.

Star and I both had to self fund ABA last year and do the teaching ourselves. Our children made more progress with us as untrained amateurs than with specialist outreach teachers. Does that not raise concerns that something is wrong?

Many Councils and professionals seem to think they are untouchable and COP does not apply. I have worked in lots of fields but frankly councils operate like something out of the dark ages. Elsewhere its all about outcomes and I think the tide will turn eventually but only after they have probably failed alot more children and cost the State alot more money in the long run.

Do you think you do a good job when you have hundreds of children on your caseload? Isn't it right to highlight problems with under resourced provision? If professionals spoke out about the gaps and failings of their profession and campaigned with parents we might be able to get central govt to change tack and make your job and ours easier. But it seems to me that professionals in SN who are prepared to speak up for our kids are very few and far between. Which is odd because there is never any shortage of NHS doctors or nurses going on Radio 4 and speaking out about Central Govt policy. Why do Council employees not speak up for the kids they work for? Why do we not hear SEN officers and autism outreach staff on the radio / tv saying how badly children with SN are being failed. Or lobbying councillors for more resources.

And actually I find LA autism staff far more wedded to particular philosophies (eg mainstreaming) than most parents. Most of us have read about all the autism therapies going rather than just been sent on pre selected courses. Then we chose the ones which were available and had evidence behind them. Unlike the LA who often spend alot of time and money on things with no evidence base at all just because it seems cheap.

You would not get away with giving a cancer drug with no research base or evidence of effectiveness to a patient - why is it ok to hand out interventions to children with SN with no evidence behind them and which fail to make the child improve? why is no one coming along and saying to outreach teachers this child has not made any progress why not? Why have you not added value?

"I will work harder for someone who I feel is working with me not against me"
Are you saying you offer a child with a nice parent a better service than a child with a PITA parent?
Isn't your duty to both children equal?

Just looking over some of what Professional says and these things stand out to me.

'You are fighting a losing battle and I would stop with all the quoting of COP and guidance etc etc it doesn't intimidate many HTs or LAs.'

'But I will work harder for someone who I feel is working with me not against me and who doesn't feel I somehow owe them simply because I am employed by the state.'

The first is both inaccurate and misleading. Holding people to account for how they have already agreed to work (ie implicit in them signing up for the job)is not intimidation. Everyone can and should do their job properly irrespective of 'pressures'

The second is very sad indictment of the fact that many 'professionals' commit acts of agressive vengeance against those who are not happy with how they work. There is a knee jerk cornered dog response even when those peopel themselves openly admit to their colleagues that things are not as they should be. Heaven forbid that the facdae should crack and flaws exposed or admitted to the other side (because that is what this is-two sides.)

You and I are both owe parents Professional, presicely because we do work for the state. We are resources, servants of the citizens of our country. If those of us who can't swallow that don't like it, then quite frankly we should piss off and do something else.