Totally stressed by the system

[yomellamoHelly]

Feeling really wound up.

Ds in 3rd week at special school. They're not delivering on statement. To see them for fifth time tomorrow before I send the letter I've drafted off to Director of Education.

Phoned NHS to ask that ds goes back on their waiting lists since school keep insisting he gets everything - equipment clinics all therapy from them. They insist he no longer meets their criteria and won't put him on their 18 month long lists. Assure me it never happens the way I'm being told it happens. Won't tell ring and tell school as much though. Case worker at LEA won't get involved. School increasingly dismissive of me. No idea how to solve this until tribunal in November.

Already shelled out a fortune on private therapy as NHS purely hands-off approach due to staff shortage / waiting lists. Tribunal process costing a bomb and moving house to give ds a downstairs room so looking at lots and lots of money going out over the next few months.

Feeling quite burnt out with fighting every one and would love to tell them all to take a hike. Feel I have enough dealing with daily life never mind this stress. Can't believe life with a disabled child should be like this. Can't see the battles ending either.

Will be having a few glasses tonight!

Hugs.

Don't really know what to suggest. It shouldn't be like this should it? I know what you mean though, having a disabled child is enough to cope with, without the constant battles with school, lea and health authorities.

I hope it gets better. If it's any consolation i'm on my second glass already!

Ooerr! Still 2 to go to bed. At least it's chilling.

I'm sorry it's all seeming so overwhelming at the moment.

I know exactly how you feel - I've spent the last 4 years feeling like that.

2 house moves, 2 school moves later, with no help form OT, SALT or any other services at all, dd1 is now at least in the school she should be in, and the LA are (finally) paying the bill.

You are right, it shouldn't be this stressful.

I hope it eases up for you soon.

why are school unable to meet his needs?

In what way are they not delivering yomellamoHelly? The system does suck.

Am back. All kids in bed. (Hurrah!)

They're delivering on working in a small group with a qualified therapist [on each therapy] once a week.

They're not delivering on 30 mins direct therapy of each therapy (school assert this is the 30 minute group of 4-5 children that I've mentioned above - they don't have enough staff to deliver any 1:1 therapy) or drawing up and delivering a programme every day (they don't do programmes!).

They didn't comment on draft statements or final statements until he was about to start and they realised there was no equipment in it. His start was delayed 4 weeks while they haggled over it. I wonder if they ever read them to be honest.

On the plus side am feeling a lot calmer now it's gone quiet. Ds1 at home (ill) today and youngest not really slept today. Going to Shred to work off some adrenaline and then tuck into the booze. Feel much better for my moan and will doubtless pick myself up again ready for tomorrow. Thank you all!

yomellamoHelly

Good for you for keeping up the good fight. It is so ridiculously hard.

I thought that the statement would allow funds for school to buy in the staff for 1to1 if that is what the statement sets out?

Enjoy the wine!

Hi, sounds awful but may I sk the following questions (it's the way my brain works):

1. Does D have an assigned social worker. If she doesn't, you should insist on one.
2. What physical and emotional state are you and your family in as a result of their failure (ask your GP for a letter outlining such effects
3. Are the school failing to meet her educational needs because they do not have what they need.

I would urge you to see a social worker asap and demand they hold a professionals only meeting to examine why this is taking so long. I am suggesting prof's only as it's not a pleasant sight to watch them blame each other. I work in the field and it can be scary but the outcomes are generally positive. Sorry for the long text. Best wishes

Feeling the same way as you Yomell, just wanted to say enjoy your wine, recharges your batteries and tomorrow is another day.

Just checking on this thread. Teeth gritted about meeting today (don't think there can be many tears left) so may battle commence (again)!

Bobbyla - Have scheduled a multi-disciplinary meeting scheduled for end June (earliest date everyone could make). Not prepared to leave it lie for so long though. Also had them before and found it very hard to pin them down on anything - they're just box-ticking and have no interest in discussing things they're not able to deliver because of resourses etc. and uninterested in the effect that has on us. Feel the massive meeting thing is an excuse for giving us nothing because no individual takes responsibility for not giving us anything. SW knows everything that's going on ad nauseum but has not done anything. My experience is SS play dumb about what a struggle it can be getting anything for your child. Face to face everyone is sympathetic, but still no-one actually does anything. At ds's end-of-assessment meeting I was actually embarrassed for (previous) SW she had so little clue. School does not have what ds needs but should have said so when they read the statement.

If school do not have equipment/staff that is needed to deliver statement that is LA problem, not school's.

That is the point of a statement, and why it is worth pushing and pushing ot get things written into statement, as then it is legally binding.

After all, your ds could be at a MS school, who wouldn'thave the staff/equipment either - it is up to the LA to provide. They MUST provide the staff, or the equipment, of the funding for whatever is written into the statemnt. This is the law.

eg, if it says your ds needs OT (sorry, simplistic example, as no idea what oyur ds needs) and thereis no OT at the school, then LA provides other NHS one. If there is no NHS one available, LA either buys inprivate support or provides funds for you/school to do so.

Have a look at IPSEA - the LA are notproviding what they are legally bound to provide, ie what is written in your ds' statement.

Quick update.
Met with school who were quite frank. Had got to that point as I was going to be fobbed off by any more bullshit. They told me they discussed with the LEA what they would provide in the school fee and what they would require additional funding for (letters to support this). The LEA have paid the cost of the school fees and for LSA stipulating that it is temporary. No 1:1 therapy.
So I can't send a letter to the Director of Education because there was never an intention by the LEA to give ds 1:1 therapy. Unbelievable!
Has made me look at his statement in a completely different light. Forms in for tribunal today!
[Mutters list of expletives!]

It's good to disagree on occasions it helps the debate. Insisting on an allocated social worker can often force then into a position were they have to case manage. When this happens the SW first responsibility would be do a deep diving exercise into the file to examine who has or has done what and why. Following that it is usual practice to hold a professionals only meeting. It is not deliberately designed to exclude parents it's intended instead to ensure the things promised are delivered. Parents are informed and then hopefully join the process. It does sound tedious but it can be a very powerful way of identifying and acceptable strategy.

Insisting on an allocated social worker can often force then into a position were they have to write lies about you, give you a lot of stress by ordering you to make changes to your lifestyle under threat, and all to justify the position of the LA not to meet the needs of your child.

Most cities have what are called Law Centres. They are run by solicitors and in my experience are excellent i the advice and practical advice they give. I have had may parents helped by them with such issues as respite care and the provision of special equipment. Oh and they are free! I live in Coventry and we have one, try googling in your own area and go and see them. More work I know and more stress but worth a try. Also start thinking about yourselves. What help are you getting. There are numerous counselling organisations that may be able to help, including your primary care counsellors available through your GP. They are the quickest to respond and if they are out of their depth they will say so and point you in the right direction. Take as much help as you can tolerate. A glass or two of wine can help but it doesn't last long and if you are like me I have a hang over the next day after 2 glasses (big one's mind). Good luck and best wishes

Starlight - Have had the list of requirements they wanted us to comply with twice (2 different SWs)! Both times dh called their bluff by saying "fine send us the forms outlining those requirements, stating why they are requirements and how we are required to follow them to keep them happy (equipment suggestions etc..) and who checks up etc".
Were things like they were unhappy that ds sleeps on a mattress on the floor half tucked under ds1's bed (cot needed by - then - newbie, couldn't fit second bed in room and also a cot making a bunk-bed the correct solution if ds1 had been older and not dangerous on the ladder. Forms never arrived and list of requirements not brought up again once the implications of what we were asking sunk in.

Bobbyla - My experience has been that real life doesn't work the way you're suggesting. It would cost somebody money if they were identified as the person responsible for delivering whichever part of that strategy and round here they like to pass the buck on to someone else. Causes me huge frustration. The strategy the professionals seem to have agreed is that we the parents are responsible for everything and they line up to criticise us for then getting on with it / sorting everything out to the best of our ability. They always shut up once we turn round and tell them to provide x,y or z then.
Is why I thought SA was the answer since it legally pins people down to delivering some help (at last!) other than it always falling on our shoulders.
And I don't need counselling - just a punchbag and this place to make normalise my life a little (doesn't feel so personal when I read stories from other people going through the same s**t)!

Yeah I did that too. 'So you say that leaving a gas fire on all day is dangerous, and that if I can't see that you have grave concerns about my parenting? Could you give me the evidence for this please?'

So you say ds should have toys in his room, and I asked why, you said it was 'common sense'. When I said it wasn't common sense to me you said that, again, if I couldn't see it you have concerns about my parenting.

So you say if I don't have time, I should 'MAKE' time, and that all parents need to make time for their children.

So you say that whilst my ds fits the eligability critera for repite, there are far more disabled children out there so he won't get any.!?

I think bobbyla that you have been on the 'system' side too long. Input and outcomes are not the same thing!

Bobbyla I'm really sorry. Not meaning to get at you, but your line about 'getting as much help as you can' grates with me a bit. Often it is the battle to GET help that requires you to need more. Help just ain't out there for the asking!

Thanks for your message thickyStarlightTrollGirl and you have no need to apologise. We are all different and we cope with things in different ways. I just worry about people having the right psychological robustness to enable them to survive as best they can. Although I have been in this line of work for 38 years I have never regarded myself as an expert and I would rather work in partnership with parents than in an advisory role (we know our own kids best) and there may be some truth in the battle for help stimulating a need for more but as an ex trade union rep I always found that asking for more was one of the first principles of negotiating the system! Kind regards.