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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:

maddiemo · 08/01/2004 10:28

May well know same people. Do you keep in touch with friends from here?
Dying to ask which nursery your ds1 went to as we also had a few problems in mainstream nursery.

I'll start saving for the SALT then.

Jimjams · 08/01/2004 14:12

Only a few maddiemoo.

The "evil" nursery was a big chain one. What a disaster....... I was terrified to put him in anywhere again their treatment of him was so bad, but luckily the place I found was wonderful. I think this is his last term and he'll be full time at school from the end of this term.

maddiemo · 08/01/2004 20:58

Jimjams,I have chosen a small playgroup for ds4. We now have a borough nursery senco who is supposed to go and advise nurseries but I think it is just one person for the whole borough.
It's such a shame that your ds1 had such a bad nursery experience, glad you found a good one in the end. I hope he settles really well when he goes full time to school.

Jimjams · 08/01/2004 21:21

oh our pre-school advisory team are fairly useless. Luckily the nursery manager ignores them (she has a shelf full of autism books- for some reaosn she is fascinated by autism- knew nothing about it until my friend's dd (who is now 7) joined her nursery and then she was hooked.

Small places are good! (his current nursery is very small).

Davros · 08/01/2004 23:16

Having contact on the internet with people in several different countries, my observation is that what you are entitled to in the UK is second to none....... but getting it is another matter as we all know. The way statements work, i.e. provide for the child's needs and once agreed it must be provided, the benefits available (is there anywhere else you can apply to get a car?), even down to Freedom Passes seems far better than anywhere else I've come across. I think expertise is far greater in the USA but getting it and paying for it is another matter. I'm a member of a mostly-USA Egroup and people there have a lot of problems with School Districts, claiming on their insurances for therapies etc. I also have a friend who moved to Perth in Australia and I don't think she is getting anything like what she was getting here but she moved for many reasons and is very happy. As usual, of course, I'm talking about autism......

fio2 · 08/01/2004 23:19

Davros, I know you are right but we can still moan

Davros · 08/01/2004 23:25

Of course, if you look at the thread I've just started you'll see moaning for England!! I suppose its easier as time goes on to forget just how hard it is at the time you're trying to access services. You all know how it is, once its resolved you move on to the next battle.....

Jimjams · 09/01/2004 10:18

what's a freedom pass?

Davros · 09/01/2004 11:56

A Freedom Pass is the same as an old folks' pass, you can use it on buses, trains, tubes at certain times for free. Disabled people can get it from age 5 I think. We don't use ours much but now and then. I've also registered with Dial-A-Ride as my son's Saturday Club asked us to. I think they used it to get a mini bus when they went to the Aquarium and other trips. When you add it all up there's lots of different things, we have our Statement which used to fund our ABA home prog for 3 years and now funds a place at TreeHouse. We get higher rate DLA and mobility with Blue badge and option to apply for motability car, plus possible reduciton in car tax too which I don't claim as it sounds quite restrictive. We now get 2.5 hours a week direct payment from Soc Svs @ £8.10 an hour for a carer (babysitter!). We get a reduciton in Council tax down to one band lower than the one we would be on because we have a room in our home "for the sole use of the disabled person", in our case an ABA therapy room but I don't see why a sensory room wouldn't count. I don't get Carers' Allowance and I'm not sure if I should. I was working and then on maternity leave until recenlty....... Apart from the above we go to aromatherapy/cranial osteopathy cheap via a charity (£minimal), swimming club via a charity (£8 pa), horse riding with Riding for the Disabled (c£10 pw), Saturday morning club with a charity (£8 pw), special needs trampolining session (£c£3.5opw) and we used to go to a free sports session on Sundays but my son couldn't tolerate the echoey hall!
So it all adds up but it all took hard work to access and some of it has kicked in over time too and it sometimes takes years to find out what's available. I made it my mission the year before last to get higher DLA and blue badge. My mission in the last year was to access all these out of school activities. I think this was all phase 2 after the diagnosis and statmenting phase which was some years ago now for us. Hmmmm, what shall I tackle next?!

fio2 · 09/01/2004 12:04

You lucky thing Davros We are thinking of doing a therapy room when we move. Can we do it like a playroom but with certain equipment in? Do you know of anywhere you can get info on what it should/shouldnt include?

We have just got our blue badge but I hate how everyone looks at you when you use it, as if you shouldnt. And another thing dd is off school so I had to take her to ASDA with me. They lock all there disabled trollys up so I had to go and ask. She said 'oh well they quite difficult to push' I explained she was too big for a normal trolly (she is 4 now) And she pulled a face and the other woman behind the counter said ' she doesnt want her running all over the place!' I couldnt be bothered to say no she wont be running everywhere - I want the disabled trolley because she is bloody disabled. I dunno just because she looks normal people asumme she is - I wish they would think more.

Jimjams · 09/01/2004 12:07

Fio2 there's a thread further down about sensory rooms. We're making one at the moment.

As for the Asda woman grrrr. I know what you mean about not being bothered to say anything, but sometimes its worth it to see the ignorant gits squirm.

fio2 · 09/01/2004 12:15

thanks jimjams, I will go and have a look now

I would like to them squirm I am just too shy. Dh is the opposite, he just tells people to bog off!

Original poster

eidsvold · 09/01/2004 18:38

fio - you should write to ASDA Head office and cc it to the actual store - and name and shame the store even better if you get the woman's name - make sure you also tell them that you will be passing this experience on to others in the hope that they too will think twice about shopping there again.

rmake sure you really let them know how disgusted you were with the rude and ignorant comments from the Service desk - or should I say Customer Service desk...... especially given that you would give anything for your daughter to run around the store.....

I know sometimes you just want to forget it - but people like that make me sooo furious as they are so ignorant and we need to be strong and say NO - that kind of behaviour is not good enough......

OP posts:

Original poster

eidsvold · 09/01/2004 19:00

if you are too shy to say something then - put it in writing when you get home - and keep a copy - then you have proof that you have contacted them - if nothing happens you can name and shame them in the media... why not

OP posts:

Davros · 09/01/2004 19:42

fio2, agree that you should complain to Asda, maybe their website has somewhere you can send an email to? I've found this quite a useful way to get a spontaneous complaint off somewhere but its not easy to keep a copy so you'd need to remember to print it before sending or write down the date at least. I tend to waver between the bog off type and can't be bothered to say anything, all depends.....
If you're going to set up a special room then I think the biggest thing to remember that it MUSTN'T look like its used for anything else. If there's a bed in there, move it out when the person comes to inspect, ditto for a dining table. Also have a lock fitted and emphasise that brothers and/or sisters DON'T routinely have access. I think they're more used to it being for OT type stuff but the lady who visited us agreed that ours met the requirements even though it was unusual. Its well worth being busted down a band, a good saving.

Jimjams · 09/01/2004 20:49

I'm going to give that a go. We will have a futon matress but it will have a vibrating matress on top (oo-er). It'll also have an easel but I'll move that out. Good idea about the lock.

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