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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Woo Hoo - SALT

41 replies

eidsvold · 06/01/2004 19:54

We have been trying to access SALT for dd ( given that 97% of people with Down's syndrome have some SAL problems) It has come down to the fact that we will have to pay for our own - if we can find one who is not overloaded with cases..( no such luck yet)

BUT

In Brisbane - where we are emigrating
(returning to) Children with Down's syndrome - aged 0 - 6 have PT, OT and SALT appointments regularly. After 6 it becomes part of Ed Dept.

How silly of us not to realise we would only have to go about 16 000 miles to get SALT for dd.

OP posts:

mrsforgetful · 06/01/2004 21:56

How long till you emigrate? When read what you said I can only assume that no-one who makes descions in this country has a disabled child! If they did then we'd all benefit from the level of care they'd demand for their child! my ds1 is a very able AS child- and to be told by his head of school that 'unfortunately due to his AS he won't reach his full potetential' is so painful to accept- because apparently as 'far' away as scotland there is legislation to do with the education authority having to do all they can to assist a child to achieve their potetential- however in the UK statementing will only be agreed if the child is 'below' the norm for their age- i may be wrong...ANYONE....please correct me...I'd love to be wrong on this one!
Anyhow EVS ...goodluck....and make sure you send the relevent departments who 'failed you here' plenty of photos of your child being 'cared for properly' in Austrailia!!

Festivefly · 06/01/2004 21:59

That is such good fate eidsvold, doesn't it make you think that you have made the right life choice. I really believe we can get what we ask for in the end

Jimjams · 06/01/2004 22:18

Nice one eidsvold.

In the meatime have you checked linkwww.asltip.co.uk/main.asp\ASLTIP{} for a SALT. I've had 3 from there now and they've all been very good (had so many as one went on maternity and then we moved). The one we have now is absolutely excellent.

Jimjams · 06/01/2004 22:19

That went wrong I'll try again

ASLTIP\ASLTIP

Jimjams · 06/01/2004 22:19

still a cock up but it takes you to the right page!

ThomCat · 07/01/2004 09:56

Edisvold - I am amazed that you don't get it regularly - I didn't realise you didn't. That's so unfair. It must be a bloody postcode thing again as we get all those things as often as we want and they were provided within weeks of her being born. We also get eye and hearing test every 6 months still. I go to OT, PT and SALT once every 3 -4 weeks now. Can't believe that you haven't been provided the same level of care, that makes me so angry and sad.
Well at least you'll get it when you emigrate, just a shame you couldn't get it here.

Jimjams · 07/01/2004 09:58

blimey TC where do you live?

fio2 · 07/01/2004 10:03

weird isnt it, we have struggled for services with our dd here too but when we move she will get ot, salt, pt and play therapy once a week!!! i nearly fainted

Bumblelion · 07/01/2004 10:18

I think this is so awful. My DD has severe global developmental delay and is seen by various specialists every 3 months (eyes, hearing, development clinic) and has portage once a week and a SALT visits every month to keep a check on things although she has not actually been referred for speech therarpy. She is now 2 years 3 months and doesn't talk at all. When I say doesn't talk, I mean doesn't make any noise apart from a very definite "da" for ta (thanks) which she does everything she is given something.

She has got to have a development check carried out at our local family centre when she is 2.5/3 when they will decide whether she can attend main-stream school or whether she will need to go bo a special needs school, although my portage worker and her nursery and my Local Authority Daycare Worker have advised me that there is no reason why she shouldn't be able to attend. Because she has been having portage since last May if she is "allowed" to go to a mainstream school they will already have the funding in place if she needs it. Through having portage, it seems to open a lot of doors. She has to go to nursery two days a week because I work but, through my portage worker put in a referral to our local authority for them to pay towards her nursery costs (£52 a week) as they believe attending nursery is actually benefiting her. Just heard that they are going to pay £32 a week towards her costs, leaving me only £20 to pay.

This I find hard to believe because, in my eyes, she has to attend nursery anway but if they are willing to help, then great.

At the end of the day, whatever help she gets and whatever school she needs to go to, as long as it is for the best for her, then that is fine. To me she is just (name) and I wouldn't have her any different.

The thing I find hard is that so much help (practical and financial) is being offered to me when I have not even applied for any of it, and there are lots other people out there who are just not getting the help they need, or are finding it hard to get that help.

Jimjams · 07/01/2004 10:22

play therpay? In Kent??? You must be moving to the right part of Kent. Bromley was as disasterous as down here for services.

ThomCat · 07/01/2004 10:37

I live in Pinner, Middlesex Jimjams.
Everything was handed on a plate to me. I didn't ask for it, it was just given.
It's so sad that this isn't the case for everyone,it's awful.
Literally within weeks we were having OT, PT, SALT and had appts every week which have decreased to once a month now and we have an overall assesment every 6 months that ties all 3 up and we discuss her overall development etc etc with the head doctor. All this and the eye and ear tests are done at Northwick Park Hospital.
I'm so sorry that not everyone receives the same level of support. All come and live in Pinner or Harrow etc.

eidsvold · 07/01/2004 18:39

This reply has been deleted

Message withdrawn

fio2 · 07/01/2004 18:55

jimjams - glad we didnt move to Bromley then because dh only works a few miles from there and it was one of the places we looked at!....bit tooooo pricey for us though

maddiemo · 07/01/2004 22:05

I'm in Bromley.
There are services here, but very very long waiting lists. Actually I found pre-school services very good. It seems to get much worse as they get older, education looks especially grim. I may consider home ed from secondary age.

Jimjams · 07/01/2004 22:53

Did you go to the Phoenix Centre? We didn't ever get past a waiting list for anything. We were on a waiting list for a 3 month review to see whether we needed to go on the Hanen programme and see a paed, but then the 3 month review became 8 months, and then we moved.
There were some good private SALTS around.

DS1 is only reception age, but we're thinking of home edding at secondary as well (or primary if it all goes pear shaped).

fio2 · 07/01/2004 23:00

oh is it to do with centres then? my dd will be going to a 'centre' twice a week...dont have to wait because of her statement - which they dont like to do in pre-school in kent i am told!

maddiemo · 07/01/2004 23:06

Yes we have spent time at the Phoenix, We were down for hanen but never got to the top of that list,did get early bird though. We got a diagnosis after 15 months wait with complex communications(that was considered really fast). I think they are really overwhelmed with the number of cases they see. We are not due to see paed for 12 months.
Its a shame you didn't get further than the waiting lists as the Phoenix school is excellent. My son did not go there but they over saw his unit placement out reach.
Where in Bromley were you? If you don't mind my asking.

maddiemo · 07/01/2004 23:10

Fio2 - its different in various parts of kent. Where are you moving to?

Jimjams - my son is also reception age. I just like to plan ahead!
I have been thinking about a private SALT. Can you advise?
Thanks

fio2 · 07/01/2004 23:14

east kent (whitstable)

maddiemo · 07/01/2004 23:23

Fio2 Afraid I don't know much about Whitstable.
The Phoenix has everything on site, hydrotherapy, soft play, sensory room etc. Maybe your dd will go to something like that. Where I am they don't like to statement before school age however my ds still got sn placement it was just classes as an assessment placement instead.

fio2 · 07/01/2004 23:25

she has got a place in canterbury at a 'centre'

fio2 · 07/01/2004 23:26

my dd goes to a brilliant place here in staffs but after the sn nursery they get hardly any help - it is horrible really

Jimjams · 08/01/2004 07:32

I was in Bromley Common maddiemoo. Where are you? We probably know peoploe in common if we have children of the same age Used to walk past the Phoenix centre with ds as a baby thinking "what is that place?" Ho ho.

We were lucky when we moved as ds1 got a place in an excellent mainstream nursery- we had a disaster at a particualr nursery in Bromley which shall remian nameless! The manager/owner at ds1's nursery really cares and understands about autism. DS2 starts there as well in a coupe of weeks, but he's NT.

I was told 3 year wait for complex communications! We were lucky again when we moved. As ds1 had had no assessment at all we were given a place on a multidisciplinary assessment panel after about a 6 week wait.

For private SALTS have a look at ASLTIP . I've used kathryn Murrell in Petts Woods and Philippa Benson in Sevenoaks. (both listed there) Both were very good. Philippa has a website you can find on google.

maddiemo · 08/01/2004 09:55

Jimjams, I am in Hayes so we were pretty near. When did you move? I do have friens on Bromley Common.
I already knew the Phoenix through audilology, in fact they were the first professionals to raise concerns. I delayed the referral as we were all ready under Farnborough for bowel problems and failure to thrive and I wanted to see what they found first. I got the shock of my life when the ccs told us their waiting list was 2 years+. We sent a few letters and our ds3 was diagnosed after 15 months. The ccs told us it was because he was a clear cut case. I think the waiting lists have improved but its still years rather than weeks or months.
All other waiting lists are pretty long. We are waiting for audiology for ds4 and will probably refer to speech therapy soon.

I have heard of Kathryn Murrell. Did you see someone weekly? Just thinking about the cost.

Where are you now? I have read but have forgotten .

Jimjams · 08/01/2004 10:08

We left Bromley a year and a half ago. I had some friends in Hayes as well. We must know some of the same people!

I saw Kathryn for a 6 weeks slot weekly - it is pretty pricey. We're seeing someone weekly again now. But now we're in Devon so we pay 35 quid a session rather than 55! It's worth it though. She is every experienced with ASD and ds1 loves her.

I saw Philippa for a couple fo sessions but she was 8 and a half months pregnant so it was just to get ideas!

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