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Newly navigating system - autism help please?

(26 Posts)
konika30 Mon 24-Aug-09 06:30:17


Hubby's big adventure is over and now wants to move back to England to be around family. We have 2 ASD children and I am really trying to find out what I can expect for them when we arrive.

Really hoping you might offer advice and share your own experiences. We are thinking of the Bolton area.

1st child is asperger and 5 years old. He is currently in the equivilent of nursery
2nd child is more your classic, moderate autistic with developing language skills. He also is in 'nursery' at a special school.

My queries are:

What type of support do people usually get on their Special Needs Statements? Is it enough or do you need to fund private services? Hopw many hours with what (e.g speech, Ot etc).

How many people get things like ABA, TEACH or other programs on their statements without Tribunals?

My sister in law said the boys (who are citizens) would be entitled to carers payments and there might be more than 1 but not get a parenting payment if you get carers?????!!!???

Love to hear from you!

jennybensmummy Mon 24-Aug-09 07:02:34

hiya, i dont know of the salt, ot etc provision in that area at all so cant help on that front. however you can apply for dla (disability living allowance) for both boys which can vary from about £18 upwards depending on their needs. There are 2 parts to dla car and mobility if you phone dwp and ask for forms as soon as you can they will backdate to the day you requested the forms. Once you have got the dla applied for it can take about 11 weeks, if they get middle or higher rate care you can also get carers allowance for caring for them but this depends on if youre working etc. should explain it all better though

Debs75 Mon 24-Aug-09 15:27:30

I would look ahead and try and find an area which is serviced by a couple of good SN schools and has a good support service for taking dc's on activities in holidays etc.

Personally we don't get enough salt. He has a session a week with a salt and his class teachers do the rest everyday, we try and keep it up at home.

You should be enitiled to DLA for both and if one of you doesn't work you can get carers allowance. Once you get that you can get rent and council tax benefit.

Good luck with the move

Marne Mon 24-Aug-09 15:32:29

Hi, i have 2 dd's

dd1 is 5 with AS
dd2 is 3.5 with ASD (classic of high functioning, we are unsure yet)

Dd1 attends main stream school and is doing well with no help (so far), she hasn't got a statement and has no 1:1 help.

DD2 attends a sn nursery 2 mornings a week where she receives SALT once a week and is waiting to see OT, she also attends Main stream 3 mornings a week where she gets 1:1 for 1 hour a day and they are using TEACH. She doesn't have a statement but still gets the help she needs, she will be statemented when she starts school next year, at the moment we are unsure if she will go to Main stream or SN.

You should be able to get DLA, we get midle rate for dd1 and higher for dd2 as well as carers allowance.

Debs75 Mon 24-Aug-09 16:16:59

Mean't to add get your statements from where you are now and any programs they are receiving now, preferably with reports to say these programs are working. You then have an argument for getting the same level of help over here

konika30 Wed 26-Aug-09 00:12:26

Wow! A SALT a week!! Really? That is fantastic!!!!

Is the process relatively simple to get a Special needs Statement? Just not sure what sort of service provision to expect for my little ones.

Debs75 Wed 26-Aug-09 09:55:43

Not really the SALT goes to his school and has the whole school to see so he only gets 10 mins

grumpyoldeeyore Wed 26-Aug-09 10:57:38

You should contact the local National Autistic Society branch for info on the local services, there is also a social / trampolining group - your best bet is to contact these and try and speak to local parents about nursery / schooling. I know that there was a Lancashire Under Fives Autism Project on the go at some point (LEA project) sometimes if the LEA put in a lot of funds to mainstream it can be hard to show you need more than this. We live in Yorkshire and can't even get our child assessed for a statement, we get 1 hour SALT a month alternate months home and nursery. You can't get into a special school without a statement although sometimes they will take kids moving into the area on an emergency basis until the statement is sorted out. The presumption is that a child will be in a mainstream school unless there are reasons not to so you might find you need to argue for a special nursery place. My DS is the moderate - mod severe end (little functional speech at nearly 3) ad we are being told he has to go to mainstream nursery. You get DLA + carers allowance if one of you earn less than £95 a week after tax. Look at the NAS or Contact A Family websites - COF have loads of guides about benefits etc you can download. There is an ABA school in Wilmslow you might want to consider. If you want ABA you should post on the UK ABA site and ask about experiences of the local authorities you are thinking about and which have funded ABA. Most LEA's don't fund unless you take them to a tribunal. You need to collect lots of evidence of what is working for your children now (special nursery / ABA etc) to show this level of support needs to continue.

konika30 Wed 26-Aug-09 14:55:53

Thank you vey much for all the information. My younger son is mod autistic with language only just emerging .. takes time. Why can't you get a statement? I was reading up on the process, and it said parents can ask for a statement and the LEA has a time limit to provide. If your child is diagnosed then doesn'tthe LEA have a duty to provide a statement?

WetAugust Wed 26-Aug-09 19:24:55

No Konika30 - it doesn't work like that. Your liklihood of getting a Statement is dependant on many things, not least which Local Authority area you live in as some are more amenable than others.

Statements are issued when a child requires more support than their shool can provide out of the SEN budget that is delegated to individual schools by the Local Authority.

There is no 'one size fits all' in terms of Support via a Statement for any particular diagnosis. If it's thought that a Statement may be required the LA will undertake a full assessment of the child's needs which will idenitfy the difficulties and quantify the support required to overcome them. Only then will the LA determine whether or not to issue a Statement.

If you think your child needs additional support at school then the person to discuss it with in the first instance is the SENCO at school. If school are unwilling to apply for a Statement and you think one is required then you can write to the LA yourself and ask them to undertake an assessment. they may agree or may refuse.

Best wishes

IUsedToBePeachy Wed 26-Aug-09 19:41:37

WA is right- you can apply to have your child assessed but theres no guarantees I am afraid

we're not in bolton (or even near) but do have one with AS and one with very similar levels to your ds2 (albeit older so a bit further along no speech at 4)

Where we are, there is no input bar whatever you negotiate with the LEA for Aspergers as it doesn't meet their definition of disabled. Our ds1 is very aggressive and has particular areas of especial need, but there is no flexibility. DS3 is on a list to be assessed but just a waiting list with no hints as to an end.

Services across the UK are patchy but I think its fair to say you do have to fight to get things in palce. DLA is a Godsend as it is absed on need rather than actual label, but whilst we were lucky and got in forst time, many do not.

Absolutely agree the NAS is the place to start.

Oh, ds1 is in a mainstream school and gets 10 hours, though not 1-1; its funding for a TA so a few of them share her funding and she's available to all of them all the time IYSWIM. DS3 used to get 16 hours (bear in mind he was non verbal and incontinent when first awrdded) and now is in a special needs palcement instead.

konika30 Wed 26-Aug-09 23:44:15

WETAUGUST - So even though both boys have a diagnosis and have been receiving 'special ed' and therapy input they would get thrown into a mianstream setting? Sounds like a 'sink or swim' and reactive system.

PEACHY - Common misconception about aspergers. The difficulties the children encounter aren't always recognised. angry
Not sure what DLA and IYSWIM are?

grumpyoldeeyore - Thank you so much for the advice. I've made afew calls and really happy with what I've found!

The more I'm looking into this area the more I'm realising that the service level is inconsistent nationally. Reading up on the processes it seems so easy and straightforward. Really glad everyone is willing to share their experiences with me & advise of pitfalls in the system.

Just a thought. If you have a diagnosis I would've thought a Statement of Special Needs would be a given. How could it foster good relations between parents and school if the school isn't properly resourced to meet the childrens needs? Would the schools be supportive of applications to get a statement (if only from self interest)?

WetAugust Thu 27-Aug-09 00:39:39

No - I didn't say that they would be automatically thrown into a mainstream setting.
However in England the mantra is 'inclusion' and specialist placements are very much the exception. The assumption is that a child should be in mainstream (or in a mainstream resource base for children with ASDs, attached to a mainstream school) unless its needs can only be met in a specialist setting. To get a special school placment (or even to get a place in the more sheltered mainstream autistic resource base) you would almost certainly have to have a Statement.

If you child is currently receiving special school education then you should make the LA of the area into which you plan to move aware of this and request an assessment that may lead to a Statement (and ultimately to a special school if the child's needs are assessed to be greater than can be met in mainstream).

Yes - the system is crap - nobody is disputing that. parents of children with SEN have protracted battles with intransigent LAs who are reluctant to fund appropraite SEN education - to the poit that many parents are forced to take their LA to a Tribunal just to get their child's needs met.

You need to bear that in mind if you are planning to return to England.

konika30 Thu 27-Aug-09 07:32:50

Thanks for clearing that up. I've been reading up on the tribunal process and trying to ascertain if it would be necessary and if so, how much. Not sure if anyone has had success self representing.

I think the key will be to collate as much info here as possible to build a case when we get there.

From what I'm hearing, OT is lacking so it might pay for us to get the kids OT reviewed prior to departure.

What would you rate as the biggest streessor / lack of service?

StarlightMcKenzie Thu 27-Aug-09 08:36:01

Message withdrawn

konika30 Thu 27-Aug-09 11:30:04

Are you given an explanation for no OT? How have you learnt about the sensory processing issues?

Ahh respite ... my brother in law lives next door to a lady who works in a centre. The kids go for overnight visits for respite care.

I'm appreciating all the advice. Easy to think 'the grass is greener" but we have to know the realities of the move ... particulary as it could impact the kids so strongly. The more downfalls I hear, the more I can prepare.

StarlightMcKenzie Thu 27-Aug-09 12:34:28

Message withdrawn

konika30 Thu 27-Aug-09 15:21:36

I spoke to BIBIC today. They sound great!

How was your experience? Did you got to Wales or Somerset?

StarlightMcKenzie Thu 27-Aug-09 15:24:38

Message withdrawn

IUsedToBePeachy Thu 27-Aug-09 17:22:19

I've been to both, though I am not entirely certain the Welsh one exists atm- or it might again. The entire estate seems to have been changed though.

I also grew up near the Somerset one, and we lived under a mile away. I dealt with them through work before using them for both boys, and can credit them with enabling 2 statements, helping with a DX and getting ds3 to talk

So.... a fan really LOL

IUsedToBePeachy Thu 27-Aug-09 17:22:43

Oh and Starlight if you go CAT me, I'm often near as Mum lives close still

IUsedToBePeachy Thu 27-Aug-09 17:24:47

Oh and we do get OT

we're being discharged butb she has been great, worked with school and us, had lots of useful input (and tipped us off that school wsn't telling us an entire truth about ds3 before move to SNU)

SALT is fab also; you have to wait for it but in all truth the NHS services aren't too bad at all here in SE Wales..... it's everything after (SS support etc) that may as well not exist

grumpyoldeeyore Thu 27-Aug-09 17:43:52

Forgot to say you need to download the Special Educational Needs Code of Practice - there is stuff in there about children moving into the area from a special school elsewhere. Also contact any nurseries etc so they know you might be coming before they blow their SEN budget on other things. Respite care is avail via Social Services assessment or charities like Barnardos but not automatic.

Debs75 Thu 27-Aug-09 17:56:43


DLA Disability Living Allowance
IYSWIM If You See What I Mean

Starlight Give someone an ear-bashing Ot is not just for adults, there is a childrens OT service but they are stretched very thin. They are usually attached to a children's centre. It took us years to get one and in the end we only got to see one because we badgerered them so much and since then they have been a godsend

DavethePlasterer Thu 27-Aug-09 18:04:22

Yeah I know. I found Paed OT dept and called them. They told me that their criteria says no ASDs because otherwise they'd be overrun shock

I WILL make a nuisance of myself, asking to see their policy document that says that etc etc but it is no. 136 on my list of battles to fight. It is on a burner though and won't be forgotten.

Starlight here!

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