Major rant. People who promise services then don't deliver

[Jimjams]

OK majorly annoyed today.

School have asked me to take ds1 out of nursery even though he is only going to school part time. I pointed out this meant that he would have nothing to go to during the summer holidays- whereas if he stayed at nursery he would at least have 3 sessions a week. They insisited that he is taken out (last day tomorrow ) and said that I should contact inclusion services to arrange a summer playscheme.

I did this- it's run by ds1's ex portage worker. She promised on the phone that I could get 10 sessions over the summer provising I returned the form ASAP. I returned the form the day after receieving it.

Letter today- due to "huge demand" no money available for ds1. I know one person using it- her son attends a private school with no extra support, and doesn't struggle- he has been assessed and his mother has been told there is nothing wrong with him! And WTF did the ex protage worker promise him a place if she couldn't deliver- doesn't she realise we rely on thigs like that? Both mentally and practically?

So currently we are receiving no servcies. No OT (that's finished) No SALT (maternity leave) NO playscheme, no respite, not even bloody full time school. If ds1 has nowhere to go during the summer holidays I will be unable to go anywhere. I can't go out with both him and ds2. DS2 will have 3 sesssions at nursery a week, but no time with me alone (and one of those sessions is being provided for free because the nursery manager is a superstar). I can take ds1 to some places by himself- but ds2 will not be able to go out at all. I can't go to the supermarket with ds1 as he can't handle it at all now.

Anyway so pissed off I rang SS services today (or at least tried to what a palaver). Am going to ask for direct payments for respite. Does anyone get these- davros? We fit the criteria but SS are in crisis down here so god knows whether we'll get anything.

If we don't ds1 is going to spend his whole summer with his head stuck up the clothes on the washing line. Not good for him, not good for me and not good for ds1.

So f*** off.

Oh sounds strange- it's his choice to stand with his head up the clothes- and goes ape if we try and take him away (or if the material is too thick to see through).

Grrrrrrr. Makes me want to scream, so goodness knows how you feel, JJ.

Though the image of the clothes thing sounds very funny

jimjams if i lived nearer i'd offer to take your ds over a few days over the holidays. he and dd2 could spend the time behind the curtains or under the flag hiding the records. if we had a washing line she be hiding somewhere amongst all that too.

i belive mieow had problems last summer with regards to playschemes etc. is there a CATS (dont know if they run in your area) group u can apply to. is there any other schemes u can try and get in on. this must be so hard for u, surely they must be able to sort somethign out. tho, actually after having run ins recently with SS i can say they are poor here atm too.

hope u get something sorted.

I don't understand- what business is it of the school to insist that he be taken out of nursery?They aren't providing full-time education for him so why don't they just piss off. Is there no possibility of going back on the nursery thing and demanding his place back? It's just outrageous that you should be expected to cope with no support like this. Is there any point in trying to get some press coverage to galvanise the support services into action? (aloha? what do you think?)
Fuming on your behalf, as you can see.

Very hard to cover stuff like that except in local papers I think - sadly
Agree though - WHY does the school want your ds out of nursery?
I cannot believe the position you have been put in. YOu really don't need this, especially now.

I don't understand either about why the school are telling you he HAS to leave nursery?? Is it really any of their business???

Extremely pi**ed off on your behalf about the playscheme too. Why aren't these things decided on NEED rather who sends the form in first?? We're trying to get ds1 into a similar playscheme for the holidays and know just how much it means. Is there some kind of reserves list in case anyone drops out?

Complain to your MP? It is about a failure of (promised) public services. It's a complete disgrace.

It might be worth going to local paper, although they usually want photographs of mum and child.

It makes me angry that you are given the impression provison is available when it cleary is not. My LEA makes a big thing of its play scheme accepting SEN children, however when I enquired it was for HFA only an he was not eligible.

I did once go in to our estate agent( when we were moving house) with the children and refuse to move until they got their act together. It di work. If your nerves can take it a sit in at social services may amke them see your son needs provision.

Excuse typing Rushing out door to work

Jimjams - I rang SS a few weeks ago about summer playschemes and they have agreed to fund ds and dd for 2 days (10-4) throughout the holidays. I made a call to the duty social worker for the children with disabilities team and had a call within half an hour to say that yes both dd and ds(nt) could be funded just fill in the forms they send and that was it. I am really sorry to hear that you are having such a hard time with it all. Have you considered contacting your local mp as I think you have a pretty good case/argument regarding the provisions. It really doesn't seem fair at all.

Jimjams, I was thinking same thing about press coverage; I write a fair bit on social care, disabled kids etc; wondering if any more specialised publications (which are the sort of thing people in that field actually care about a lot!) would work. And/or education pages. Just might be worth a try. What do you think?

That sounds good MI. I can see what you mean aloha, I was just wondering if it might be possible to generalise out from jimjams' situation to talk about inequality in special needs provision, especially in terms of stuff like the rich woman whose son doesn't have a diagnosis getting a place! I would have thought that it might be possible to get people interested, and as you say MI a specialist journal might hit them where it hurts (much as I would like to do right now )

The only problem about press coverage is that dh won't have ds1 mentioned (which is fair enough I think). I was quoted in the local paper recently as "a mother who asked not to be named".

My MP is useless. I contacted her about the fact that because ds1 is not getting SALT his statement provision is not being met (which is illegal). I had a letter back. I rang and asked either to meet with her, or to speak with her by phone as I had concerns. Nothing. That was about 8 weeks ago.

Direct payments may be able to fund playscheme places I think (if I have read the stuff right) but first I need a care assessment. There are statutory time frames I think within which these things have to be done, but I know they won't be and I doubt that it will be up and running in time for the summer.

This inclusion playscheme is a joke. SOunds similar to your experience maddiemo. The idea is money is provided to fund children in a community playscheme of your choice. So a helper (usually untrained and very young) is provided to give the one to one. Unsurprisingly my friend who has a dd similar to my ds1 tried it last year and it was a disaster. So she's been told there's nothing for her. There is another centre here supposedly for disabled kids but they won't take children with autism. The thing is taking children who are so high functioning that they need very little help suits the scheme because then they can say what a great success it was and give themselves a hearty slap on the back. Never mind that there is nothing for children who have the highest level of need. (6 weeks of no structure is not good for an autistic child).

I am trying to find volunteer students to come and work with ds1- even if we just get a few hours out of it. The private SALT is happy to help set something up. We really can't afford to take on another ABA tutor- we are now overdrawn at the beginning of the month- never mind the end! Am trying to start work from home- but that will take a while to get going. I can't even ebay over the summer as I can't get to the post office! Hmm unless I arrange for things to be posted on Saturdays...... now that's an idea..... I know that nursery will give ds2 as many free sessions as she can- as she knows how hard it is- and she cares!

The school have annoyed me about the nursery thing. They say its confusing for him to be in 2 places (it isn't!). He can't go full time until they have employed another memeber of staff. And now they keep discussing whether or not he should be at the school or whether he should be elsewhere (not that there's anywhere else that's suitable for him to go). Big meeting next week with everyone so I am going to moan big time. And in the meantime try and get some support from SS.

Hi Jimjams, I have been busy revelling in the joys of half term! Quite good today actually. My advice would be on various fronts:

• can you get the nursery place back? Say you WILL take him out..... but not until after Summer and he won't be confused over the summer as he won't be at school
• You've already contacted Soc Svs about DPs. It depends on their assessment of DS's needs and the family. KEEP REMINDING THEM THAT YOU'RE PREGNANT! Don't tell them about other private arrangements that you fund (e.g. ABA tutor), none of their business. You may be lucky and get what seems to be the default entry level here which is 2.5hrs per week, better than nothing and once you're in the system should be possible to increase over time. I don't know about the time limits on how soon they have to sort this. Top tip, don't let them come to your home to assess (although I have so far as hadn't heard this idea) go to their office WITH DS! Keep telling them what you can't do with both children together, talk about DS2's needs etc
• play service here seems to be separate to Soc Svs DPs etc. I thought it was the same and you got one or the other but have been told that's not right and you can get both. Maybe find out if there's a separate person in charge of the Play Svs
• any local charities offering anything?
• get onto those colleges, 6th forms even and anywhere else you can think of. Do you have an "advert" looking for people to work/play with DS? I can email you mine privately and you can adapt it (or chuck it in the bin if you like ) If I think of anything else I'll post again. Don't know if this helps at all

Do you have a local branch of Mencap? If so call them as I know they run holiday schemes.

Bloody hell jimjams what a complete @rse the school are being I dont know what to suggest. I am having similar problems atm. I was assured all services when I got to Kent only to see they havent materialised, apart from OT. If I want physio sessions or Salt sessions I have to catch a prehistoric bus with a physically disabled child a screaming 2 year old and a double buggy. Travel 10 miles and then have a 10 minute walk when I get there, plus a flight of stairs (!!) when I get there. They dont seem to understand the trouble this would cause. It is almost impossible to get on a bus with them both. DD has problems with getting on and off, then I have to watch ds aswell plus get all my stuff on and off. When I told them of transport woes I was told I could get onto the train without having to take them out of the pushchair. In this instance I would have to get the train up to Faversham, change trains and come back down to canterbury....nightmare! I have give up, I am doing her physio and salt at home. Tha mainstream nursery is also providing no extra support despite her having a statement. Roll on september when she is at school, still not sorted. Sorry I am ranting but it just drives me mad how it happens to all of us. I was wondering whether it was because we both lived in a seaside/rural place and services are just non existant?

Sorry no help whatsoever

WOuld love your ad davros.

I thought of taking that tack with SS. Any reason not to come to the house as ours is trashed anyway. Thought that might work in our favour. Having said that it didn't do my friend any good. She showed SS what happened when her dd is unsupervised (her dd is 7 and there are dogs drawn on the wall- life size, the carpet has been destroyed by ink- copying fimbles footprints, she's been up to casualty for eating stuff from the garden etc) And the SW said that she didn;t have any problems that any other mother of 2 children had!!!!!! (He dh works away a lot). As for the carpet SW said that people "pay lots of money to get that sort of design". WTF?

Friend has just phoned me - she had a letter this morning from SS saying that the local payshceme for disabled childen run at the local SCOPE school will not be running this summer, so everyone should apply to the scheme I was told yesterday is already full - but there wouldn't be enough places t go round for which they apologised.

I may write to the people who administer the summer playscheme and ask how they decide who will receive the funds. I think it is done on first come first served (so depends who hears about it first) rather than need- which seems unfair.

I've already had a row with the school about nursery- but I will raise it at the meeting next week. I think the autism outreach team leader is concerned that ds1 is not in school full time (partly because of the respite issue) so it will be a good time to raise it.

Oh Fio2 that is so crap Unbelievable. Perhaps you should tell them to get out of their f*** air conditioned cars and try your journey. Pricks.

Anyway- finally I have tracked down the number of the children's SS dept - so will ring them this morning.

Two reasons to go to them and not have them come to you. One is they can't (and aren't supposed to ) make judgements about your lifestyle, cost of home etc (alghouth I thought they could do this) and the other is to see your child out of their home environment where they might behave better and the place is adapted to them.
I really don't understand why the school is getting funny about nursery at this time, the worst timing possible! Very annoying.
Fio2, can't the OT and SLT come to you? Ha ha, I expect not but it might be worth asking.

Haven't worded that very well. I mean, if DS1 is seen at home he might behave better and you, the home, the family are all used to his funny ways, he might be more relaxed or know where things are, can go off to his room as a bolt hole. Whereas he might be more of a handful in their office. Maybe not but worth considering.

yes that is very true

And they defintely do make judgements- normaly depending on the area you live in. However folling my friend's complaint about lack of parity (ie everyone was getting random number of hours depending on which SW they saw) all requests now go to a funding panel apparently.

Duty SW still hasn't returned my call- but I have emailed the person who told me there was no playscheme places, as SS have today sent out letters to parents (not me) telling them to apply to this scheme, that the closing date is 11th June and that places will be decided then. I suspect that is just a SS cock-up and that the scheme is full but have emailed the co-ordinator for an explanation.

Jimjams -- am not an SLT myself, but have worked in several university departments involved in training speech therapists, and still have plenty of contacts.

I know there were often ads asking for student volunteers to work with SN children on a vountary basis -- I don't know what the take-up was, but if you think it might be worth a try, I'd be happy to put out some feelers on your behalf.

It would probably help if you could be as specific as possible about details, such as your ds's needs, what sort of help you'd need, number of hours, whether you could have someone living in, or offer them a nominal amount of money etc.

I think you're in Devon, aren't you? I think the nearest academic institution training SLTs would be the College of St Mark and St John in Plymouth. I'd be happy to contact the lecturer there, or to find out the name of the clinical placements co-ordinator, for example, to see if they could help. But there might be students with homes local to you studying anywhere in the country, so we could always spread the net a bit wider.

I know this doesn't really get to the principle of your problem, but if you think this might be useful approach, do email me on frogs5767hotmailcom.

Thanks frogs- that's very kind. DS1's private SALT is on some training board at marjons so she's going to find out more for me I think.

If I have any problems I will contact you straight away- thanks for your offer.