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Paed just told me they won't assess ds for autism because........(and ABA)

62 replies

AngryWasp · 24/08/2009 12:49

I got a private dx. I told her I wanted the full disciplinary because I never want it to be held against me that ds didn't have one, but she told me that the MAA is a diagnostic process and he has already been diagnosed.

I'm in tears, but do I really not have any need to worry?

I thought I would need a LA Multi assessment if I have any chance of fighting for ABA?

He was due to have this on 21st September but it looks like all it will be is the second Team around the Child meeting (the first one was more like 'working around the team', - or 'team working around the parents'.

Can anyone suggest what to do now, or reassure. Many TIA.

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WetAugust · 24/08/2009 20:07

But... I might be losing the plot here.

The LA have agreed to assess. Therefore you'll be summoned to see Community Paed, Ed Pysch, SALT + anyone else you tell the LA to seek avice from. Only when all that advice has been compiled can the LA determine a) what difficulties your son has and b) what support is needed to overcome them and c0 who will deliver that support, when and for how long.

So you (and they) seem to be preempting 'the process' by stating up front that ABA is required and that, according to the LEA, it cannot be provided.

I would tackle this in a number of ways:

  1. prove that ABA is needed - by ensuring that it's in your Parental Advice and by starting ABA now, even if you have to pay privately and get that person's advice included in the formal assessment as part of the evidence gathering process.

  2. by keeping a diary of all converstaons with LA or anyone else. This will be useful at tribunal (if it comes to that) to show that your LA is prejudiced agaisnt ABA and has been since the start of the 'process'.

    You then just have to let the assessment run its course. You are now bound up in a legal process that cannot be derailed by anyone - so, although i agree that it's ueful to have as much information as you can to mitigate against what you believe will be the LA's failure to recognise the need for ABA, that argument really strats at Tribunal if the LA cannot be persuaded to your way of thinking.You can't really ask the LA to speak to Professor X at Uni X in general terms about the merits or otherwise of ABA per se -that's not what the assessment process is about - it's about identifying your child's needs and providing adequate support. However, that doesn't stop you personally approaching Prof X to ensure he would be a witness pro ABA at any Tribunal.

    So, let the assesment run its course BUT, research ABA, get consulatations, reports etc from anyone (privately or otherwise) who could support your case, ready for submission to the LA in an attempt to get them to agree without an appeal.

    You're doing exactly the right thing in being tenacious and ensuring the LA know they will have a battle on thir hands should they 'disappoint' you.

    Appeals are expensive - not just for the parents. The LA will be wieghing up the cost of providing some (minimum ABA) against the costs of their legal representaion at SENDIST and the ongoing costs should the Tribunal order it to provide ABA. And don't forget the LA will be wary that if they were to give you ABA - "they'll all want it". Costs would then spiral to meet the current unmet need.

    At the minimum you'd need a private Ed Pysch report at Tribunal and almost certainly a private SALT. I paid £800 for the private Ed Pysch some 5 years ago. Each day she would have had to attend a Tribunal would have costed a further £500 + travel expenses. Then you have the cost of your solicitor / barrister - that was another £3K overall. The LA charge their legal team to the good council tax payers of the Authority.

    Appealing is a very expensive business. Extracting sothing adequate from them without having to resport to appeal would be fanstatsic.

    Best wishes
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AngryWasp · 24/08/2009 20:52

WetAugust You are right and your advice is fantastic. I do have to pre-empt though because things like FOI requests have set times that could hold me up or risk going over deadlines so I need to have a game plan even if I never get to play it fully.

I know I'm faffing around sometimes and getting lost and side-tracked and I sometimes even make a phone call to the SEN caseworker simply because I've not spoken to her for a couple of days and I miss her voice, - but I AM trying hard to stay focused. I don't want to 'wait' during any process, I want to use the time to build a case, whether or not I ever get to present it.

They have agreed to hold a Team Around the Child Team meeting on the day that the CDAC multi-assessment was supposed to happen. The Paed, SALT, Ed Psych SNHV and Autism Advisory Service will all be there. I want to be very well prepared. I feel intimdated tbh but I absolutely will not sign anything or agree to any suggestion that day, even if I think it is reasonable.

Pipin I haven't yet begun ABA. I'm keen to get started and am in contact with DF, but it is hard to get information at this time of year, from him and anyone else. The UKYAP's website is on holiday too.

I get the impression a VB emphasis will be a bit more suitable for ds, - does anyone have any recommendations?

moondog You're lovely! I think it is a good idea to mention names in letters and resolve to do it much more often.

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WetAugust · 24/08/2009 22:36

Hi Wasp/Starlight/...

The best thing you could do at this stage is learn the SEN COP - from cover to cover. the SEN COP is the LA's bible - it is a code of pratice that they must follow. if you can quote chapter and verse of the COP at them they do sit up and take notice.

(It's great bedtime reading)

Then there are 'Circulars' - these are issued by the Dept fo Ed (or whatever they are calling themselves this week) that expand on the SEN COP in certain areas i.e. new policies that must be followed as a result of legal precedents etc or new best practice for various conditions etc. these are all available on the Dept for ed website. The LA particularly dislike you being able to quote individual circulars.

If you want to prepare for Tribunal now rather than later then the IPSEA website has a step-by-step pack that is available on-line to help you compile your case. Excellent resource.

You can use your own legal representative at Tribunal but TBH if you know the SEN COP and the 'rules' and you have built a strong case then, as YOU are the expert on YOUR child and his needs then I would suggest that you would be more than capbale of presenting that case yourself with the assistance of your expert witnesses (the private professionals).

When you have this sort of fight imposed upon you, as I did, it's one huge learning curve in attempting to educate yourslef and also to develop some robust srguments and counter-argumnets against the LA's own proposals.

Remember - the LA do not have to provide the best, the provision that they do provide just has to be adequate. If you are fighting for a gold-plated solution you will be disappointed - having said that get everything you can.

And I hate to say it but unless things change radically in the next few years you will have to go on fighting at every stage in your child's school life. Mine's 21 and i still have battles on a weekly bais with various fuckwits out there {grin].

But you do develop a confidence in your own abilities and the fight becomes easier in many ways - you start to learn the strings to pull, how to clear obstructions and that when they say "No" it's just a starting point for negoiations .

Your son has a terrific mother and you should console yourself that you are doing everything that you possibility can for him.

Best wishes.

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AngryWasp · 24/08/2009 22:51

WetAugust Thank you for your post. I'll take your advice with gratitude.

'unless things change radically in the next few years you will have to go on fighting at every stage in your child's school life'

I've recognised this already and am resigned, but hope at least in the future that the fights come one at a time rather than all at once like they are now, immediately post-diagnosis.

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moondog · 25/08/2009 05:55

When you go the the 'Team around the child meeting', you go in looking composed an d well dressed with a briefcase, posh pen and nice notepad.

You take someone similarly well dressed who yuo introduce as your 'representative'. She says nothing , merely sits and takes notes adn perhaps occasinoally asks fir 'clarification' {Doesn't matter who she is-even the cat's mother-they think she's a legal rep. though!]

Before the meeting starts, you circulate a piece of paper and ask everyone to put their name, job title, address and email.This gives you useful info. as well as putting you at a psychological advantage. Time to take a few breaths and realise they are there to serve you and your child.

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moondog · 25/08/2009 05:56

Wet has some great advice.

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daisy5678 · 25/08/2009 10:05

Have you looked on the SENDIST website at past decisions about ABA? It can get a bit obsessive, but will help you prepare and I also used copies of similar cases to J's to persuade the LEA that they really didn't want to go to Tribunal! They agreed .

The link is www.sendist.gov.uk/Public/search_results.aspx and I would search under Lovaas and ABA as keywords or home-based as schooltype.

Here is an example:

Key Words: Autism EarlyBird Lovaas ABA
Appeal No: 000917 Concerning: H
Gender: male Age: 2
Type of Appeal: Against the contents of the statement, parts 3 and 4.
Type of school named in the decision: Maintained nursery school.
Date of Decision: May 2001
Appeal

Preliminary
Counsel on behalf of both parties applied to the Tribunal to admit late evidence. On behalf of the
Parents; application was to admit:
a) A note taken verbatim from the LEA file when it had been inspected by them; and
b) Updated costings.
On behalf of the LEA; application was for the admission of-
a) Updated costings; and
b) The executive summary and an extract from a report produced by the SEN Regional Partnership on Autistic Spectrum Disorders.
We took the view that the costings were simply aides-memoire which would assist the Tribunal, rather than the introduction of new evidence. Admission of the verbatim note from the LEA file was opposed by the LEA's representative, who argued that it was irrelevant to the case. We were assured however by the parents' representative that the note had become relevant since very recent proposals made by the LEA to the parents. It would throw light, we were told, on the LEA's policies. We decided to admit the verbatim note on the grounds that, exceptionally, it could not
have been seen earlier that it would be relevant to the hearing, and to place such weight upon it as seemed appropriate.
In relation to the LEA's application to admit parts of a report on ASD, which was unopposed by the parents, we decided to admit this material because, exceptionally, it had already been referred to in expert evidence produced by the parents and we accepted that sight of the report itself would help us and make sense of the views expressed by either side in the case. We were told that the report had not been published at the time by which the LEA's evidence had to be sent to the Tribunal.
Facts

  1. H, who is not yet 3, suffers from a disorder on the autistic spectrum. Since the age of

19 months, he has been treated at his parents' own expense on an ABA programme by a
LOVAAS therapist. This is an intensive behavioural education programme, largely
based in the child's own home. The purpose of this appeal by H's parents was to
obtain an Order from the Tribunal that the ABA programme be named as special
educational provision in Part 3 of H's statement and that in Part 4, a combination of
home-based provision and nursery-based provision should be specified.
  1. As the appeal progressed towards a hearing, the LEA's position had changed and at the

time at which we heard the case, we saw correspondence dated 12 and 24 April 2001 from
the LEA to the parents which indicated that the LEA was prepared to pay a substantial
contribution towards the cost of the ABA programme for a limited period (albeit for a
lesser number of hours than the parents had arranged), to run in parallel with a transition to
nursery based provision. The LEA's proposal was that, with one to one support, H should be integrated into a nursery of the parents' choice, leading to full attendance (i.e. half time) by January 2002. Indeed integration to that extent and by that date, was common ground between the parties.
  1. The issues between the parties had therefore narrowed considerably from the time at which

the Notice of Appeal had been lodged. The parties were however unable to reach
agreement and it therefore fell to us to decide whether the provision to be ordered for
H was the ABA programme which he presently has for 36 hours per week (which the
parents wanted increased to 40 hours per week) for 50 weeks per year or the LEA's
alternative "eclectic" programme to include elements of the ABA programme and other
provision.
  1. We heard evidence from one of the senior educational psychologists for

the LEA, who has considerable expertise in home-based programmes. He had
had involvement with H, but had not seen him since February 13 2001. His
evidence was that he had doubts about most of the tests which had been administered by
the parents' privately instructed educational psychologist. The senior educational psychologist for the LEA doubts centred on the appropriateness of testing children as young as H and with his difficulties, in that way. Furthermore, by analysing the two sets of tests administered by the privately instructed psychologist, was able to suggest that the gap between H and his peers
was increasing rather than decreasing. He drew that conclusion from the Vineland test results, on which he was prepared to rely.
  1. The Senior Psychologist for the LEA also had concerns about Hs dependency on the ABA therapist and foresaw difficulties in Hs transition to nursery and eventual loss of one to one therapy. The LEA was opposed to 40 hours per week of the ABA programme; research indicated that 15 to 20 hours would be more than adequate and in any event H needed a wider range of provision, including a communication programme known as PECS and the LEA's own Early Bird.
  2. The evidence of the consultant child and adolescent psychiatrist who gave

evidence for the parents, however, was that the PECS Programme was for children who
are pre-verbal. H has made significant strides in language over the past few weeks
and the PECS Programme was no longer appropriate. Furthermore, the Psychiatrist also casts doubt on whether the Early Bird Programme would be useful. His view was that Early
Bird was directed towards the period after diagnosis of autism when parents were most
stressed. It was not relevant in this case, he said.
  1. The parents' evidence (supported by other witnesses) was that H had developed very

well since going on the ABA Programme. He was now using 180/190 words, socialising
with other children and relating well to his older brother. This was by contrast with his
attainments and behaviour only a year or so ago. He had started that day at nursery for the
first time. His physiotherapist had discharged him three weeks ago on the basis that his
gross motor skills were developing normally. We heard evidence that his eye contact had
progressed in leaps and bounds. He was now anxious for the first time if separated from
his parents.
  1. His LOVAAS supervisor said that H was well motivated and that made

him different from other children on the programme. She knew of no research which
would justify any decision to limit an ABA programme to 20 hours per week. It was an
intensive programme which needed to carry on through the holidays (which the LEA's
alternative did not offer). Children came off the programme in other cases and she would
expect H to be in nursery half time by January 2002. H's parents assured us that
their objectives are that he be educated in mainstream school.
  1. We heard from the LEA's Assistant Education Officer about the two

alternatives which were available for nursery provision Special Nursery School A and
the nursery at Primary School B which was the parents' preference. It was
there that H had started on the day of the Tribunal. The LEA did not oppose the
parents' preference and it was therefore unnecessary to explore the alternative any further.
10. We also received written and oral evidence about the costs of the proposals of both parents
and the LEA. This was unclear and inconclusive and in view of the decision which we
have come to it was not necessary for us to have regard to the evidence of costings and we
do not record it here.
Tribunal's conclusions with reasons
a) We were impressed by the evidence we heard of H's progress particularly over the
past few weeks. Cross examination did not undermine this. In our view, it is not credible
to maintain that the ABA programme which H undertakes for 36 hours per week has
not been a significant contributor to that progress. This is not to say that other
programmes might not be effective; we are however satisfied that the programme which
H has is effective.
b) The alternative offered by the LEA was described by them as both "eclectic" and
"bespoke". It contained an element of ABA Programme, together with nursery education,
and both of these are part of his parents' plans for H in any event. Other parts of the
LEA's proposals lost credibility during the course of the hearing, particularly the PECS
and EarlyBird programmes and it was not clear to us what other provision the LEA was
actually proposing.
c) The weight of the evidence of progress, together with the absence of any satisfactory
alternative, therefore led us to the conclusion that the appropriate provision for H at
the present time is the ABA/LOVAAS Programme on which he is engaged at the present
time for 36 hours. We are satisfied that this would appropriate provision, but we are not
satisfied that the LEA's alternative would constitute such appropriate provision.
d) We see no need to order an increase in the provision which H is at present receiving,
of 36 hours per week for 50 weeks per year. We heard no convincing evidence which
persuaded us to order an increase.
e) We take at face value the assurances of the supervisor of H's programme,
that she would expect H to make a successful transition to nursery education and of
H's parents that their objective is full time primary provision. We do not consider that
we are in a position to order a limit to the time for which the ABA Programme should be
provided, but we are aware that in the case of children under 5, LEAs should, according to
paragraph 5.22 of the Code of Practice, informally review their statements at least every
six months to ensure that the provision is appropriate to the child's needs. Such reviews
complement the statutory duty to carry out an annual review. We take the view that in this
case the LEA have made commendable efforts to reach agreement with H's parents as
to the provision which is appropriate to him (although as we have said we have been
unable to find that the provision at present proposed by the LEA would be appropriate for
H?s needs at this time) and we express the hope that in the context of continued
dialogue between the LEA and Henry's parents, six monthly reviews will constitute
effective monitoring of the continued usefulness of the ABA Programme as H moves
into increased provision in nursery and primary school. We have included an appropriate
monitoring provision in our order.
f) Our powers to make orders in respect of children under 5 are to be found in Section
312(4)(a) of the Education Act 1996, read together with Section 319. The effect of these
two provisions, read together, is that we may arrange for special educational provision for
a child over the age of 2 which is additional to, or otherwise different from, the
educational provision made generally for children of his age in schools maintained by the
LEA (other than special schools) and that such provision may be arranged to take place in
whole or in part otherwise than in a school. This power may be exercised by us where under Section 319(1) we are satisfied that it would be inappropriate for the special educational provision which H's learning difficulty calls for, or any part of such provision, to be made in a school. We are so satisfied. Furthermore, having concluded that his current provision is appropriate while the LEA's attention is not approrpriate we do not need to form a view as to whether the provision made for H in accordance with parental wishes is compatible with the provision of efficient instruction and training and the avoidance of unreasonable public expenditure (Section 9 Education Act 1996).
g) The Order we make below reflects so far as possible amendments which were canvassed
during the course of the hearing.
Order
The LEA is ordered to amend the Statement of H to delete the current text (so far as it is inconsistent with what follows) and to specify provision as follows:-
a) To amend 11JA and 111B to set out that H requires an intensive behavioural and
educational programme, which can be provided by the ABA/LOVAAS Programme. This
should be provided as follows:-
i) On a one to one basis for 36 hours per week for 50 weeks per year.
ii) Supervised by a LOVAAS trained supervisor for 3 hours every three weeks at a
meeting with all the trained therapists.
iii) A LOVAAS trained therapist will accompany H during his attendance at
nursery (as provided in Part 4 of this Statement). For the avoidance of doubt, such
time is included in, and not additional to, the total therapy provision of 36 hours
per week.
b) To amend HID to add a requirement for informal six monthly reviews of H's
Statement to ensure that the provision specified continues to be appropriate to his needs.
c) To amend Part IV to provide for:
Primary School B?s nursery class.
ii) ABA LOVAAS therapy programme for 36 hours per week, 50 weeks per year.
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AngryWasp · 25/08/2009 15:52

Oh no! I don't need another hobby

Thanks though. Looks very helpful plus a lot of fun.

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PipinJo · 25/08/2009 20:17

This reply has been deleted

Message withdrawn at poster's request.

AngryWasp · 25/08/2009 20:39

I can't get any information from that site. It always comes back with 'error'!

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PipinJo · 25/08/2009 20:49

This reply has been deleted

Message withdrawn at poster's request.

AngryWasp · 25/08/2009 21:02

But every single search I do comes up with 'error' followed by a load of code.

I think it is something to do with putting in the dates?

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AngryWasp · 25/08/2009 21:03

can't find any decisions at all after early 2002

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daisy5678 · 25/08/2009 21:08

Don't put in dates - just do key words or type of school.

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AngryWasp · 25/08/2009 21:14

thanks but still not getting anything after 2002!

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daisy5678 · 25/08/2009 21:21

Right - www.sendist.gov.uk

then click on the decisions button at the top of the page

then on the 'school type' menu just click on homebased

then click 'search decisions'

have just tested all that and got 2 pages, going from 200-2003.

There isn't much on there for anything except disability discrimination after that and some are mis-labelled but you will find a couple of golden cases to help if you look hard enough! Don't think the year matters, tbh; the law and principles behind it haven't changed much at all and it will scare the shit out of the LA to be presented with similar cases that won.

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AngryWasp · 25/08/2009 21:52

okay, - think it is a time-out problem because my computer AND internet are so slow. Getting intermittent information.

Thanks. It is very helpful, but also a bit scary. Still, I can see why some decisions didn't go in favour of the parents and can hopefully guard against them.

I realise I need to find out more about TEACHH and pull it to shreds. Like the cases that seemed to have won, my ds will probably be offered TEACHH delivered by an untrained TA who is visited once a term by a 'specialist'.

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WetAugust · 25/08/2009 22:14

Hi

Tribunal decisions are a great way of understanding what you need to prove to win your case. I call it 'working backwards' from the decision to evidence-gathering that should lead to the same decision.

You can also see the Commissioners decisions for DLA cases too - which helps if you need to win a DLA Tribunal.

I didn't know anything about ABA until I googled it last night. Wow! It sounds intensive

Best wishes

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WetAugust · 25/08/2009 22:20

LOL @ moondog's advice re taking someone else to the meeting - absolutely spot on!

I took DS's current step-mother who performed her role exactly as Moondog suggested - however the LA would not commence the meeting until they has established that she had an "interest" in DS - so I had to state her relationship. However she did take copious notes and you could tell it was unnerving them .

Also quoting chapter and verse of the SEN COP to them is good.

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AngryWasp · 25/08/2009 22:34

I've been straining my brain trying to think of who to take. Now there are 3 options.

1)My dad, 63 - who used to be a primary teacher trainer but is now a freelance consultant with a fluid job title. We could come up with one and he will make a business card. He's a very creative but logical thinker and will make the whole meeting last a fortnight challenging every single detail until it is completely exhausted and everyone in the room is too.

2)DS's Godmother, 43, an gingerhaired Irish Woman, well dressed and Master of Wine.

3)DH's Professor colleague (engineering) who is extremely scary both in looks and in manner but she will turn up to the meeting late and cross.

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WetAugust · 25/08/2009 22:44

He He [Grin] For my money - defo your father. The more they look like solicitor / consultant / advisor etc the better. And of the 3 he alone has a reasonable right to be there (godmother may be a bit tenuous if the LA come sticky).

Plus if he was a teacher trainer he is proably fluent in edu-speak (the language of the LA).

What job title will you use - familial consultant? - sounds vauge but quite accurate in teh circumatnaces and the LA would probably mis-read it as Family Consultant anyway Oooh - I love it when you get one over on the bastards LA

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lingle · 25/08/2009 22:50

Take moondog!

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AngryWasp · 25/08/2009 22:52

Problem is he tends to stray off topic and challenge 'everything' that is ambiguous rather than be focussed on sorting the details of what is important.

He'll also tell them repeatively that he is deaf and dyslexic so can they repeat everything very loudly and talk very slowly because it will take him half an hour to note each sentence. He'll miss-hear things on purpose to make his point and quote the disability discrimination act if they dare to wrap up before they have cleared up everything.

He's an awkward begger!

Perhaps it could work though, - although I have to say it will drive ME nuts too!

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AngryWasp · 25/08/2009 22:54

I doubt Moondog fancies a Monday morning in Welwyn Garden City. It's where they make Shredded Wheat you know! The whole place stinks of it!

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WetAugust · 25/08/2009 22:54

Oh well - just take godmother then and if challenged tell them she's your lesbian lover

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