Here some suggested organisations that offer expert advice on SN.
Social bloody services(26 Posts)
Honestly I give up.
So ds1 was awarded 2 days at a playscheme and SS said they would cut 12 hours per week out of my dp's to pay for it. This would have left me with one part day of help a week and 3 days at home with the 3 boys (need help to go out, ds1 needs constant supervision both inside and outside the house at the moment. Outside because he climbs the 8 foot fences, inside because he climbs on the windows and hits the crappy glass). It's basically a 2 person job at the moment to even function with the 3 of them home.
It gets better. There are so many children who need to access the playscheme (which takes 6 children a day) that the person who runs is has not been able to provide the number of days promised to all the children by SS. We've all had our allocation cut. (The playscheme is run for some of the most needy kids in the city).
So ds1 has one day for 5 weeks of the holiday. Leaving me with 4 days alone at home with 3 boys and no extra hands on help.
I'd arranged to work the 2 days he was at Playscheme. So that will have to be cancelled.
Lucky I don't have a proper job.
So yes I have written another letter of complaint (waste of bloody time).
if ss awarded you the playscheme days (ie recognising your need) ask them to cough up for the extra day a week dps for the holiday period and you can employ an extra pair of hands?
Sorry to hear this, provision in the holidays in this city is a disgraceful situation isn't it.
I was hoping to get DS1 in the same playscheme (well more like dreaming really), but knew this was unlikely since SS left everything so late.
Have now been told that the youngest child they have is 8 years old and that means it is very unlikey DS1 can access it for a few years.
Of course there is absolutely no other suitable service or provision that they can offer DS1 or any other children of his age with similar problems in the city (foster care is their magic solution, haha).
I have asked for the contact details of who to complain to about this crappy situation but don't think it will make a bit of difference. Was about to write to the MP and then remembered they are about to go on their lovely summer holidays (lucky them!)
I do hope that you have more luck than me and can send a rocket up their proverbials. At the very least, they owe you half of your DP's back!
That's terrible . I can only too easily imagine how you must be feeling.
I guess you need to get those DPs increased to their former level - are you optimistic that this will happen? And when that happens, do you know of anyone who can deal with your ds and take him out and about?
What about the Homestart people?
Are there any independent ASD schools near you that run a holiday scheme for non-pupils? The residential school near us offers such a scheme but the price per day is prohibitive (something like £200 for 1-1) but if you are absolutely desperate and SS cannot honour their original commitment, then perhaps you could argue for them to pay for one day per week).
Some private schools also run summer-camp style schemes (or rather, an organisation uses the school premises to run the camp) - could this be another option to explore?
What about a residential unit for overnight respite or Family Link? I realise that such provision doesn't happen overnight but you could start the ball rolling (because there's always future summer holidays to think about).
Are there any SN childminders who could take out your ds?
I don't know where you live but the provision sounds appalling, it really does.
Have you asked SS if they have a strategy in place for SN holiday schemes? I would copy as many relevant peopls on your latest letter as possible - does no harm. Do you know of any other parents in the same boat? How are they going to cope? Perhaps they know of things that you don't.
I hope you find something. Fingers crossed.
Graciefer it's crap isn't it? I was talking to a friend who has nothing for her 11 year old dd (at place we're meeting at on Monday). Perhaps we should put our heads together and complain together. It might be more effective. There must be loads of people affected. From coffee mornings at school it sounds as if the provision for older children is just as non-existent. The person at D said that everyone was saying to her 'oh I was expecting more' so it's obvious that SS haven't co-ordinated it properly. Have they given you dp's or anything instead? Although of course then there's the problem of finding someone to pay.
Manny- respite in this city is awful. They've closed everywhere. Apparently ds1's SLD/PMLD school used to run a playscheme but the funding was withdrawn. The funds seem to have gone into inclusion schemes instead where a child goes into a mainstream playscheme with a (usually untrained) 1:1. It's completely inappropriate (and unsafe) for a child like ds1. There's just a lack of anything that begins to meet the needs of children with the most complex disabilities. TBH it sounds as if we've been lucky to get this one day.
The playscheme he'll be attending for the one day a week is very good. It takes 6 children a day, is run from the residential unit of a local SLD school and has 'proper' 1:1s who work every day with children with SLD's so don;t freak if a child kicks them or something. They also understand the safety issues enough to do things like take the children to the local shops. I can understand why it is completely over-subscribed. It's good and the only one on offer.
They've given me my direct payments for July and haven't cut any hours yet. So I have time to argue with them over that.
Yes it's rubbish, I was at the school coffee morning on Monday and it certainly is an ongoing problem, one mother said that her son went to D for the playscheme last year, but didn't get invited back this year, although that may have been a different one to the one running now.
I was thinking about if this was something the local NAS could look at complaining about collectively, so to speak. We will have to get our heads together.
I also mentioned to the headteacher at the annual review about the lack of holiday provision and he said that is something they should think about for the future, so I am thinking about getting this mentioned at future PTA meetings, you never know.
We are in the middle of the DP process, infact I have just been to the bank to open an account. New social worker told me last week on the phone we would be getting 16 hours a week, but when she came here on Tuesday with the DP guy (MW a really lovely guy that made me worry a whole lot less about the DP process, payroll/insurance/etc) she said the hours weren't decided yet and how much would we like to request at the panel , so we will have to see what happens.
I am planning to ask SIL if she would like to provide some support over the holidays for the DP's, but she is in Egypt for another 2 weeks, so how we will use them is still up in the air. A couple of the TA's at school were interested, but for the life of me, I have no idea where they would be able to take DS1.
I am so glad the summer holidays only come around once a year, but then again I feel guilty for feeling that way.
Sorry for hijacking your thread, again I really hope you can get something sorted, see you on Monday.
Not hijacking at all. My friend was saying she thought we should be campaigning as the NAS (or something else because they're ridiculously corporate and everything has to be approved) for an improvement in respite. And also to provide proper out of school activities that the more complex kids can actually access.
It is apparently a different scheme to last year. Each holiday seems to be completely separate as well. My SW assistant didn't know that although ds1 went at Easter she had to reapply for him for the summer.
god that is shit.
dd goes to a playscheme at a local sn school(not hers) it is always well subscribed.
I can't believe in this day and age there are not more around.
What I don't get is why they cut your dp as playscheme funding should come out of a different budget(does here)
I think its seen as respite rather than a playscheme- hence the cutting of dps. Which means that there isn't a playscheme suitable for severely autistic kids in the whole city. There's one run by a charity they try and get you to take, but imo (and that of most parents) it's totally inappropriate and unsafe for those with severe autism (too easy to escape and they can't cope with challenging behaviours).
now - this isn't me telling you what to do, but i'll tell you how we've fixed it here.
a group of parents who had complained were approached by the borough council and asked to form a parent action group purely to campaign and lobby for summer sn playscheme... that was about 6 years ago and the playscheme is still running... we also now on a voluntary basis organise youth activities for children with additional needs who are unable to access mainstream provision because of their disability - we run all sorts of youth activities - music, art, dance, drama, story telling, circus skills, etc etc (not all at the same time lol) weekly during term time with family festivals in the hols, a 'show' put on by the kids, and an sn matinee of the local panto at christmas.
the sad fact is that unless parents of sn children start lobbying local govt through private and public arenas (and get invited to or gatecrash all the local meetings for anything to do with children to force inclusivity or alternative provision to promote awareness of the plight of sn kids), it will not happen, sad but true.
have you got a local parent's action group? your borough council should know.
I contacted by council/social services offering day-time respite care for children with SN (I'm a childminder working within a team)
& I was told no.....unless I register as a foster carer
So as I have only 2 bedrooms - I can't help anyone through SS - seems a bit of a waste to me
KatyMac - that is bizarre? I can't believe they turned down an SN childminder?!?!?!
Our council have given us an extra-curricular adviser/co-ordinator (not sure what her official title is but that is what she does) who helps the PTA organise activities for the children in the holidays - she has also set up a holiday play scheme and co-ordinates activities between special schools in the area. I think the idea is that long-term the PTA's of schools in the area keep most of these things going and access funding to do so. Obviously it would be far better if she was going to be doing this permanently but she is very good at pointing us parents in the right direction and showing us what is out there.
I'm still totally shocked by the fact that you've secured just one day of respite for your ds across a period of six weeks. Just how do they expect you to manage and it can't be fair on your ds either (not to mention your other kids).
My friend is in a similar position; her ds is profoundly disabled and some schemes can't take him because they're not trained with his medical needs. However, she has at least secured one week's worth of holiday activities (via a scheme that runs at our ds' SN school).
And how will you be able to lobby anybody if you're tied up at home all summer?
I don't know if any other councils operate similar schemes, but in Kent there is something called the link scheme, which recruits people to work with families who have children with special needs on a voluntary basis. Might be worth looking into.
They don't allow the contact details of anyone who contacts them wanting to be employed via direct paymentss as 'they're not a recruitment agency' so the biggest problem if you get dps is finding someone with the skills to do it. We do have a childminder that ds1 goes to some Sundays who is very good, (found via here) but she needs 1:1 for ds1 so has to have an assistant available. She also does regular childminding during the week, so it's not easy to slot ds1 in there for extra during holidays.
We did have a volunteer from the NAS befriending scheme. She was pretty hopeless tbh. Couldn't be left alone with ds1 so I effectively ended up babysitting her as well as ds1. Didn't want to do more than an hour or so a week - so couldn't go anywhere, and spent the whole time talking about her boyfriend [yawn] She was a student, so no doubt has 'experience with autism' on her CV now.
There is a parent group that arranges activities - e.g. fun days - but the stuff that's arranged just isn't suitable for families with severely autistic kids because no supervision is provided. So we could go to the fun day and ds1 would be tolerated, but I'd have to supervise the 3 of them. Which is impossible. So I'm back to needing that extra help.
Ditto donkey riding. Last time I took ds1 it was a disaster. Actually school took him to donkeys this week and he managed to get into someone's flat there - so I'm definitely not taking him alone now he knows where that is. It'll be wrestles all round.
BTW, what are the usual routes for finding someone for DPs, other than going through care agencies? Was talking to one of my regulars mum the other day about if she had considered employing someone direct, but was put off by having the hassle of paying the carers income tax. Although I would have thought that would come down to the carer to sort that out. Not that I was thinking of poaching the clients of the agency that I work for, just that I was thinking of going semi self employed and wanted to find out more.
I employ people direct.
There's a payroll service we all use.
CRB checks etc are done via the council.
thats shocking that they will cut your DPs so you can have plascheme, don't they understand that you need more hours in the holidays.
we havent got any play schemes for our three this year, we still get 28 hours per month per child in Dps and we have permission to ring and arrange stuff with the two daytime respite families, only problem is one family go away for most of the six weeks and both our girls are having problems leaving me, they will go to school but won't go to youth club, yesterday they went to tescos with respite lady to buy a DVD so we are hoping to build on that otherwise it is going to be a long holidaywhen we were looking for Dp workers we put a notice in the staffroom that worked well, we have four workers now.
I've complained. But I doubt it will be sorted in time for me to employ someone this holiday.
Will video ds1 bashing the windows today (very dangerous) and send to them. It means we need to lock ds2 and ds3's room when I'm here alone (need to buy the lock today)- which means they can't play in their bedroom all summer. Of course if they'd processed the sodding DFG then the window bashing wouldn't be a problem.
Sorry OJ I shouldn't whinge on. Things like respite families going away (as of course they're perfectly entitled to do) makes things harder doesn't it? It's a real problem with the way respite is arranged.
I'm surprised some enterprising ex-carer-type-person hasn't started their own company supplying workers for families who receive DPs or otherwise need help for their SN kids. There is a company in our area who provide precisely this type of service but their costs are quite high, for example, an hour 1-1 costs about £20 (plus petrol if the kid is taken out) so it would take two hours of DP to obtain one hour of respite.
What about the YMCA - do they have any centres near you that run holiday clubs?
And if it's any consolation, all our interior doors are kept shut and locked which is a pain but you just get used to it.
oh most of our doors have locks on. Just feel a bit sorry for ds2 and ds3. And very cross because if the fuckers people at the council had actually processed the DFG then the locks wouldn't be needed.
I did think about an agency type thing, but the costs are difficult to get right. There's a YMCA but they don't run anything for kids like ds1.
Of that £20 an hour, the carer probably gets less than £8 an hour. Thats one of the things that have interested me in working directly. That way the family can have more hours and the carer can earn more. Everyones happy, except the agencies.
no need to be sorry JJ, you are not whinging, lack of services is terrible, I wished I could tell you thing improve when the kids are older but they don't you might think that at least one of our three would get a a place on the NAs playscheme, it has never happened yet.
we are off to lanzarote on Thursday for two weeks, we are scattering steves ashes there as he requested, my mate is coming out with us for first week the second week it will be just me and the kids, shame SS don't provide enough funding to send someone with me to help drink rum
with the kids.
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