Here some suggested organisations that offer expert advice on SN.

This Is My Child update

(36 Posts)

MNHQ have commented on this thread.

RowanMumsnet (MNHQ) Tue 20-May-14 11:32:36

Hello all

Just wanted to let you know what’s happening with This Is My Child.

We’ve been really keen to do something on how some local authorities make it difficult for families to gain access to statutorily mandated support (for health, social care and/or education.)

But given that the new Children and Families Act will have a big impact on the service-provision landscape, we think it’s best to wait until the Act has been fully implemented (which is due to happen in September), and then ask for your views on how it’s working, and make some noise with the results.

In the meantime, we’re going to be putting up a (hopefully) informative and useful page about the statementing process, and arranging some webchats following the enthusiastic reception for Professor Richard Hastings; let us know if you have any suggestions.

Finally, two things you may be interested in: there’s a thread running here about the possibility of us doing some material on invisible disabilities in adults, and a thread here about what would be on your policy wishlist for the main parties, so please let us know what you think.

Thanks
MNHQ

sickofsocalledexperts Tue 20-May-14 15:50:33

That is great MNHQ, though if you are chatting to any bigwigs in the meantime, could you mention that the government's Local Offer plans, which I think stemmed from a genuine wish to give parents a bit more of a shout, are not being taken very seriously by LAs. They are just so change-averse that they are more or less just writing out what they already do, but in a fancy font and on a new part of their website marked "Local Offer".

The point was that they were supposed to take parents' views a bit more on board and tailor their provision accordingly.

So, for instance, I and many others are lobbying to get ABA on the menu, but are meeting resistance.

It is the norm and 'treatment as usual' for autism in the US, Canada, Australia, Scandinavia etc so we are well behind the times here in the UK.

And we don't seek to impose ABA on any parents who don't fancy it, just to have it as an option for those who do. At present, it is only the rich or lucky who are getting ABA, which can't be right when it is the therapy with the best evidence base for autism.

zzzzz Tue 20-May-14 23:04:25

In Devon, Virgin Care run Integrated Children's services. The diagnostic pathway takes about 2 years. So if you become concerned about your child, finally see a consultant at say 3, you cannot reasonably expect dx before 5 at the earliest.

How is this possible? Early intervention is recognised around the world as the best practice. These children will have been in school for years without focused informed support.

Shine a big Mumsnet torch on that, but be prepared to be shock

In my area we got diagnosis fairly quickly (although we had already got private diagnosis prior to that) but were offered precisely nothing in terms of intervention, so not much point really.

autumnsmum Wed 21-May-14 09:15:34

The diagnosis is important . My dd2 wAs diagnosed at two. And she needed the diagnosis for the school she attends as she is in an autism class.

zzzzz Wed 21-May-14 09:37:46

The diagnosis is important because as your child gets older the consequences of their actions become more far reaching. The expectation of others becomes impossible to attain. The differentiation in education becomes more focused and harder to achieve. The need for self awareness of difference and good language surrounding it becomes more important. Everything is a bigger risk and we need a dx to protect my ds socially, emotionally, physically, and legally.

autumnsmum Wed 21-May-14 09:58:35

Totally agree with all of that zzzz

Oh I am not saying you don't need the dx, of course you do, but I knew what the dx was a year before anyone said so officially and was already making my own plans by the time anyone else confirmed it. If I had not we would have got nothing for ages, and then only a bit of totally useless SALT and an "eclectic" approach special school.

The issue about ABA being part of the local offers is very very important.

autumnsmum Wed 21-May-14 10:08:22

My dd is at an electic approach special school
And it's fantastic

The problem is not that there would be anything wrong with the school per se. It would be however that no-one ever bothered to do any kind of assessment or analysis of his specific needs, and no-one ever mentioned the idea of ABA to us, that was all down to us having to do it ourselves. The approach was very much one size fits all, here is what you need (without any assessment by an ed psych ever being done).

zzzzz Wed 21-May-14 10:13:38

I don't give a flying fuck if it's eclectic, ABA or anything else. A school with people who understand his dx and will make the necessary adjustments so that he can have an education. IT IS NOT THAT HARD AND IT IS NOT THAT EXPENSIVE. angry

Yes I agree with that sentiment, to the extent that the provision needs to suit his needs (needs which have been properly ASSESSED by the Local Authority and NHS, and not only by private practitioners at my vast expense) and be effective.

PolterGoose Wed 21-May-14 11:26:22

I don't give a flying fuck if it's eclectic, ABA or anything else. A school with people who understand his dx and will make the necessary adjustments

Yes, exactly.

It would be polite if ABAers stopped disparaging anything that isn't some sort of rigid model ABA. It's bloody rude. Surely good ABA is inherently eclectic as it uses what is evidenced to work for each individual child?

autumnsmum Wed 21-May-14 11:52:37

Polter completely agree with you , hopefully the campaign can focus on issues that affect all children with all disabilities not just an endless focus on Aba for autism

moondog Wed 21-May-14 13:56:53

Please archive the webchat with Prof. Hastings as you keep on saying you will do!!!

SisterChristina Wed 21-May-14 14:13:35

The point is that not that everyone should do ABA, but that it shouldn't be airbrushed out of the picture, and TEACCH/ eclectic should not be the only sanctioned option. The blind prejudice against ABA is inexplicable.

ABA is categorically not eclectic. It is a specific methodology, whereby the targets and reinforcers/ motivation can be tailored to the needs of each child.

At the eclectic school we were offered for ds1, there ironically would have been no differentiation for ds's needs. It was assumed he needed Pecs and a visual timetable. That all children with asd were exactly the same.

zzzzz Wed 21-May-14 14:27:53

Surely anything that is truly tailored must by it's very nature be eclectic? Ie you grab what you can from diverse sources to meet the perceived need.

What you are describing is not so much eclectic as rigid and unfocused.

RowanMumsnet (MNHQ) Wed 21-May-14 14:28:51

moondog

Please archive the webchat with Prof. Hastings as you keep on saying you will do!!!

Sorry about this blush - the problem is it's so packed with info that we're having trouble editing it down (as we normally do with webchats to make them a bit more digestible).

We may decide having a group of pages is better than one massive page - we're going to have a think about it this week.

moondog Wed 21-May-14 14:44:38

I'm sure the Prof would be happy to suggest ways of grouping the info. Would you like me to ask him?

autumnsmum Wed 21-May-14 14:45:16

Like I said can we look at respite and the sen system in general , also the issues many parents are having with getting the right equipment

zen1 Wed 21-May-14 14:55:15

But given that the new Children and Families Act will have a big impact on the service-provision landscape, we think it’s best to wait until the Act has been fully implemented (which is due to happen in September), and then ask for your views on how it’s working, and make some noise with the results.

In my area (one of the original pathfinders), the new Act is already having a big impact - a negative one. I have lost count of the number of meetings I have been to where LA reps have blatantly (in some cases almost gleefully) stated that as there will be less money coming from central government, services will be cut (the local offer pays lip-service to various interventions, but reads like a woolly, first-draft Statement e.g 'access to learning support staff, strategies to modify behaviour...blah, blah'. What concerns me the most (and actually keeps me awake at night) is the prospect of my DS's Statement being taken away and not being replaced with an EHCP. I have heard it from one of the top LA bod's mouths that one of their targets its to cut the number of maintained Statements by 50% and the new Act, with all its vagueries, gives them carte blanche to do so.

autumnsmum Wed 21-May-14 14:59:46

Zen 1 that is very frightening

zen1 Wed 21-May-14 15:08:30

Yes, I am very worried about the new Children and Families Act being so open to interpretation by LAs and other agencies.

RowanMumsnet (MNHQ) Wed 21-May-14 16:57:35

moondog

I'm sure the Prof would be happy to suggest ways of grouping the info. Would you like me to ask him?

Thanks moondog - we're going to sit down and have a proper look at it this week, and we'll email the prof if we're still unsure.

Thanks for putting my thread in your op rowan! smile

As someone with toddlers who are just possibly starting the referral process, this thread makes for scary reading sad

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