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I will not beg social services for anything

(38 Posts)
Wispabarsareback Thu 10-Sep-09 20:28:31

Hi all, it's ages since I've been on MN. Haven't forgotten about you though.

My DD2 had her diagnosis of Rett syndrome confirmed in June. The NHS has been OK mostly. But the council is making me cry. I'm pretty depressed - up and down, but definitely down today.

DD's paediatrician referred her for an assessment by the disabilities and complex needs team (social workers). Within three days of the referral letter, we received a note back from them saying that they exist to support children with severe disabilities, therefore they would not be carrying out an assessment of DD. We wrote back congratulating them on their optimism and offering them more information. And highlighting that even though we don't need social care support at this point (DD is 2), we probably will in future - and if the disability register exists to enable local authorities to plan for future needs, then DD should definitely be on it now.

We had no reply to this letter, so having left several phone messages I finally got the duty social worker on the line today. He recalled my letter but clearly hadn't read it, and was just programmed to repeat the same thing over and over. 'So why do you think you need social services?' 'But in what way is your daughter different to other children of the same age?' Oh, where to start. I told him to eff off in the end - not the most effective way of influencing the local council, I do realise, oops.

We've also received a letter in the last few days informing us that the SEN section of the council's education dept won't be carrying out an assessment of DD, as requested by her paediatrician.

I always assumed that as a parent of a severely disabled child I'd need to battle for her to get what she needs to some extent - but I'm horrified at my reaction to our recent encounters. Tonight I feel very strongly that I will not beg for things - DD has been referred by her paediatrician, who knows her well and understands her condition, and the bureaucrats at the council won't even assess her.

It seems to me at this point that the best thing is for us to put our energies into earning enough money so we can pay for whatever DD needs, rather than having to 'ask' and being rebuffed in the way we have. What's upsetting me so much about the social workers is the implication that I really want DD to have a more severe disability than she's got, and that I'm trying to blag some service to which I'm not really entitled. I'm in pieces about that.

Sorry to go on at length. Any thoughts? I know it's a long game, but I just want to hide away from it all.

AttilaTheMeerkat Thu 10-Sep-09 20:39:50

Others will be along to add their thoughts but just off the top of my head I'd be doing two things initially:-

1. Appeal the crass decision made by the Educational Department (btw they usually say "no" to start with, its all designed to put people off).

2. Speak to your MP if you have not already done so. This person needs to be informed about the treatment you've received.

anonandlikeit Thu 10-Sep-09 20:55:21

Wispa, sadly it often is a case of those who shout loudest.
Don't allow them to fob you off your dd is entitled to support & you & your family are too. It is one of the worst things about having a disabled child, having to deal with the disability is one thing but battling twits wiht the purse strings is just horrid.

Don't forget YOU are entitled to an assessment as a carer & they CANNOT refuse.. its in some law somewher but I can't remember which one!!

If you can, be clear about what support you want/need it makes it easier to target your requests.
Does your local council have any database of children with disabilities? If so register your dd, this should allow you to access some services & info without being assessed.

Do you have a local pre shcool sn group or even sn mother & toddler, they can sometimes be helpful in obtaining early years support before a child is at nursery.

Do you have a surestart centre nearby, they may have a specialist sn family support worker, allow them to ehlp you, let them do some of the chasing about, telephone calls etc, it may take come of the pressure off of you.

And REMEMBER, if you feel like hiding away for a few days, then do just that, give yourself a break, allow yourself some time.

Take care x

donkeyderby Thu 10-Sep-09 21:15:15

What do you want or need from social care? In my experience, they are just a gate through which some children get through in order to access a paltry amount of respite (most via direct payments, less via local authority respite homes). I have never found them useful for information or DLA forms etc., and it has been easier to do ourselves or through a voluntary agency.

If you are not willing to beg (the usual means of contact with SS) and there is a specific service you want to access, see if it can be done so without SS referral and cut out the middle man.

Wispabarsareback Thu 10-Sep-09 21:46:52

The main thing I want from social care at this point is an assessment so they at least know what her needs are - and I think she should go on the disability register sooner rather than later, given that the avowed purpose of this is to enable the council and other local agencies to plan for future needs. How can they do this if they don't know how many disabled children live in their area? Good advice, though, donkeyderby about trying to access things without going through SS.

I will phone our SN health visitor tomorrow to see if she has any suggestions.

mysonben Thu 10-Sep-09 22:47:59

I have no good advice to offer as we are still early in the process of getting a dx, and have had no contact with ss,...

The way they are treating you is shocking and dispicable.
I'm so sorry you are having to put up with attitude like that.

It simply is not fair, and these people are total ignoramuses!

My heart goes to you and your little girl.

Glitterknickaz Thu 10-Sep-09 23:38:34

Oh no, don't beg. Never beg.
If they don't hear you, shout louder. If they don't hear that, shout louder. If they don't hear that REALLY BLOODY SHOUT!!!

Badger them. Make a fuss. Anger rather than begging.

Phoenix4725 Fri 11-Sep-09 06:01:55

sadly a lot of things you need not just ss come from shouting a lot .I used to feel bad about it thinking taking from another child then realised if I don`t no othe rbugger will do it

feelingbetter Fri 11-Sep-09 06:32:21

Hi Wispa,
Seconding everyone else - keep on at them! Gather as much info as you can, find out the bare minimum that you are legally entitled to and then let them know you know you are legally entitled to it. (for some reason, they don't seem to like informed people)

Good Luck, its a grind but you can beat them (then suddenly they start falling over themselves to help you angry)

Wellywearer Fri 11-Sep-09 08:32:42

(for some reason, they don't seem to like informed people)

No it makes them all jumpy and twitchy lol

You have to become very assertive/subborn but at all times polite - they find that even more annoying as they cannt say they wonnt deal with you because you are ''agressive''

BethNoire Fri 11-Sep-09 08:38:22

I accidentally googled into our Coumcils externalmemos last week 9genuie accident, I am the least hackery able person in existence- was looking at info for a local schools) and found their 'secret' assessment criteria. It seems the reason ds1 doesn't get help is that although he is calssed as severe in definition of getting HR care, you also have to be able to prove a lifelong need as most people with his dx do not need support at his level. DS3 qualifies, but the whole 'waiting list' thing is a deliberate effort to minimise servie uptake by spectrum people as there are just too many.

Dospeak to the MP, about the best thing to do.

In ouur case, ds3 has no real chance of independent existence. Our plan is to dedicate my entire wage at taking the council to court for services if we don't get any by the time he is 20, as my nightmare is Dh and I dying in an accident and ds3 being uncarered for.

We are on the register- ds1 was placed there beofre the new definition came into play thankfully. But ds3 is not.

MoonlightMcKenzie Fri 11-Sep-09 09:30:33

Wispa,

Firstly (and not entirely sure if this is reassuring) you might feel like it is personal but I think, having read the cathartic thread that made you cry, you DO realise that it isn't personal most of us have very similar experiences.

Your dx is recent so you have a couple of very strong emotions to deal with.

1)The diagnosis and the future of your dd.
2)The increasing realisation that as well as the additional work of having a child with SN, you're also going to have a longstanding war with various agencies.

Neither of these things did you ask for, and neither do you want. It's bloody unfair and very very sad.

Please don't panic or get upset about SS. Don't EVER think of anything as 'over', but simply as round 1, with round 2 commencing just as soon as you gather your strength.

Round 1 with almost every agency is usually designed to put you off. These overstretched services will work quite hard to stop you from entering their already overburdened caseloads.

There is one horrible trick that you need to be aware of too, that is played by these agencies, and that is the implication that whatever help you are asking for is reserved for those children with 'real' needs. This suggestion that you are taking away services from children with bigger problems than you is not your issue, but one of management, - THEIR management.

You also need to realise that by shouting at them, you are doing your bit to push for changes in their systems. Keeping quiet and accepting that they are understaffed, underfunded will NOT improve services for all.

By all means have a plan B, but, at your own pace, with YOU in control, do not give up. MN has been brilliant for me and I'm sure you'll get a lot of help here should you need it.

Good luck!

Mitchell81 Fri 11-Sep-09 09:36:09

We have only just started having a social worker(last year) DD will be 9 in October and only because we wanted Direct Payments before that SS were of no use to us.

But we still had to threaten media, MP to allow us to use the DP for something other than what they allow in there rule book.

It was allowed but you need to fight for everyone. Sorry that they are being so crap with you at the moment. Have a break but keep fighting for what you and your family deserve.

grumpyoldeeyore Fri 11-Sep-09 09:59:15

Agree we are feeling battered and bruised by the same experience this week - LEA and SS. The LEA refusal letter should tell you your rights to appeal - definitely do this - its time consuming but without a tribunal date they will just keep fobbing you off. Look at IPSEA for info you can also get advice from SOS SEN and A.C.E. but its hard to get through on phone. Often if you lodge an appeal they will back down. Even if you go to appeal 60% cases are won. NAS have lots of stuff on this on website. We are in same boat as you and been told very unlikely a LEA will go to a tribunal just on whether or not to assess a severely autistic 2 year old. The LEA have targets not to give statements so its a statistics game - every parent they can fob off at round one is one less on their statistics. The IPSEA website has resources (look at their refusal to assess appeal pack) about docs you should request eg their criteria for assessment. Also ask for a copy of their file under Freedom of Information. We found some real gems which indicate they didn't actually consider DS's case at all (as we knew) that they just bounced it back because he was not 3 yet. If your child has SEN then under Education Act they have to provide for SEN from birth not just once get nursery place. Do you get Portage? Can't help with SS yet. Ours did give us a carers and child initial assessment but seemed dubious we would qualify for any services - awaiting the outcome. Again I would just write a polite letter saying you consider you are eligible for a carers assessment and an assessment for your child and asking for a copy of their assessment criteria. If they refuse use their complaints procedure then go to Ombudsman. Contact a Family website has lots info on resources. Put everything in writing, keep copies and if you are being fobbed off just keep making Freedom of Information requests for everything. Do you have a firm idea of what you want from an LEA assessment eg a particular nursery / level of 1:1? You need to get a copy of the SEN Code Of Practice and look at criteria for 2 year olds - and argue why your child needs the intervention. If you are vague about what you want they will want to do a wait and see approach of putting in support drip by drip to see what is needed. We are arguing DS needs intensive input now. Other thing to look at with SS is if any OT needs / home improvement that sort of thing if relevant to you. But I would only take on these battles if you have a clear objective of something you want eg a special nursery place / direct payments etc; otherwise it just sucks the life out of you.

Glitterknickaz Fri 11-Sep-09 10:08:48

Social Services won't take us on. They say we're coping too well despite having 2 boys with ASD and my daughter might also have this. My middle boy also has real mobility problems too.

At the moment though I am concentrating on the LEA - they are refusing to Statutory Assess my children. I've done everything by the book and they're still refusing so I'm getting legal on their ass.

Will deal with SS later.

masonicpixiesreadthedailymail Fri 11-Sep-09 10:34:23

good to see wispas back ;)

can you get yr dd's paed to write in? We had all of this earlier this year. SS refused to come and assess dd from my referral, and also gp and community nurse. After an arsey letter from paed they appeared on our doorstep after a couple of days

They have a duty of care to at least assess

Deeeja Fri 11-Sep-09 12:58:16

I really feel for you. We have been trying to get a referral for our autistic 4 year old. For some reason we managed to get a respite package and social worker for our 6 year old HFA son, but not for our more severe 4 year old.
We have written to everyone we can think of about this problem, the director of childrens services seems to think it is the same social worker allocated to my 6 year old, yet she claims to have no knowledge of this. It is driving me potty. The director ass also thinks we have refused a care package for our 4 year old, when we have continually requested a respite package, and had two referrals from his psych and referrals from his paed. Some one is lying to us.
Unfortunately I live in Redbridge, and am Asian, the council is racist, of which there is actually proof, so we tend to get it worse even though everyone else gets shite aswell. At the moment I am fighting so many battles, nothing is going as it should do, I am 38 weeks pregnant, and feel so stressed and tired all the time.
I haven't even started trying to get services for my 3 year old, who also has asd.
We get treated like leeches, just out to get benefits or what ever. It is shocking and really depressing if you let it get to you. The only way to keep going is to remember what our children are entitled to.
I am taking a break today, and through the weekend. I intend to start chasing everything up again on Monday.
I am so tempted to go to the media.
It is really truely disgusting.

MoonlightMcKenzie Fri 11-Sep-09 13:27:20

Deeeja shock

TheDMshouldbeRivened Fri 11-Sep-09 14:38:22

You are entitled to a Carers Assesment by law because your child has a diagnosed disability. Remind them of this.

TheDMshouldbeRivened Fri 11-Sep-09 14:41:06

we had this too and dd has severe quadraplegic cerebral palsy, cannot sit, or roll or move or hold her head up, speak, is doubly incontinent, iis blind and has epilepsy.
They said she wasn't disabled enough.
They are all wankery tossers.

BethNoire Fri 11-Sep-09 15:56:35

Yes Riven, yes they are.Wankery tosers indeed.

I mean, I read somthing about requests for help in the asd community locally being under 40% and the SSD encouraged that. Bastards- I bret a significant amount of those 60% of non assisted aprents are struggling (I know we do at times).

Carer's Assessments ARE a right in law, but ion our area they just put you on a waiting list.

TheDMshouldbeRivened Fri 11-Sep-09 16:27:19

yeah, there is genarlly a waiting list. Your local Carers group should help or Carers UK (they have a helpline) so you know your rights.
We did briefly get help with ds1 when he was about 12 but he hid from the respite lady!

BethNoire Fri 11-Sep-09 16:33:27

I've cat'd you Riven.

I don't want respite,I did want a place on the playscheme in the summer though. And I want to know we're in the system becuase one day someone will need to take over ds3's care- I can't live forever. Maybe one of his brolthers will, but I damned as well don't want it expected of them!.

TheDMshouldbeRivened Fri 11-Sep-09 16:47:47

k. But you do need a Carers assessment even if you don't have needs now. And that will get you onto 'the system'. Plus a social worker who should tell you about playschemes in your area (although mine didn't angry)

Deeeja Fri 11-Sep-09 18:14:12

Well, phoned CAPT to arrange another assessment of my 4 year olds needs, only to be told that the social worker has been assigned since June 2008. shock
Really my local council must have a terrible administrative system (being kind, they are tossers really). Dh asked management to contact social worker and inform the feckless woman.
Might ask for a new social worker but then that would take another age.
On the good news front, ds has made it near to the top of the ot waiting list. smile Something to be cheerful about.

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