Children and Families Bill - call for action because THIS IS MY CHILD!!

[inappropriatelyemployed]

A parent sent me a link to this phenomenal piece of work by Merton Mencap's Kids First Parent Forum. There is a piece about it on the blog here

I am appalled that:

(a) the DfE can't be bothered to do their own research and this has been left to a parent group

(b) the big charities, who seem to have the ear of everyone, have similarly seemingly failed to produce any research of any value, either exploring the SEN system or the practical reality of the pilots

(c) that bodies like SENDirect have sprung up without any parental consultation or involvement and without any explanation

I fear that the Children and Families Bill is actually a welfare reform that will mean cuts to services, privatization and the creation of a market for SEN provision. The threshold for enforceable EHCPs is likely to be higher than statements and I fear we will see more and more kids left to 'school resources'.

I am going to tweet the link above to try and draw attention to Merton Mencap's research and highlight the need for more.

As MNHQ told us recently on the thread about 'This is my Child', it is always open to us to run our own campaign - and in the absence of anyone else doing anything, we may have to.

If you tweet and want to help, join us Unlawful@sencollusion

Isn't that the whole purpose of the 'Local Offer' approach?

Our LA offers all families the opporunity to take up one of the 3 places a year an Adequate Education the far end of nowhere provided the person running it isn't on maternity leave and we have funding.

No we can't provide transport there as we don't 'offer' that.

Pah! Local Offer = directory of local voluntary/support groups

I run a local support group and over the past few months have had quite a few questionnaires to fill in so the LA may include me in the local offer.

Coffee mornings anyone?

There's a place for coffee mornings for sure but what has that got to do with educational outcomes for children with SEN?

And what about those groups that want to be and remain independent? The only support group I attended was an Evangelical Christian one who never invited anyone from the LA to 'speak' nor did they ask them for funding. Amazing people.

Yep, we have one of them directories, SENMGR. Plus "short breaks" in the form of activities that you have to accompany your DC to, making them inaccessible for those of us with DC with very different needs and no childcare.

To be brutally honest independence is the ONLY way to prevent the taint of corruption ruining services. The state sector is not only rotten from top to toe, but it's tentacles are now in the process of destroying the charity/3rd sector too.

I've realised recently why so many GOOD therapists, ed pyschs, and teachers etc wind up in the private sector eventually. It's because they can no longer remain true to themselves and still remain in their respective professions.

Even what/when diagnosis your child is often down to political factors now, and that should be the first stage of the journey for a child recieving help. Instead for many familes it'll be the end.

The right to an adequate education is not a universal one in the UK, and I wish the authorities would stop lying & posturing to the public about this. It's not just disabled kids that are impacted - ayslum seekers, travellers, looked after children and those that have been long term ill are also dragged into a rotten net of nonsense masquerading as support. (I taught a non -SN looked after girl who was moved from foster home/school 8 times in year 10 - how on earth was she supposed to get decent GCSE's? her situation isn't unique).

I've stopped reading news reports etc on the subject in recent months as they just wind me up now. A generation is being destroyed by those who refuse to take their nose out of the pig trough and do the right thing.

I'm concerned that what started with a seemingly attractive suggestion - parents taking control - will end up in block contracts to private providers in place of block contracts with the NHS.

Maybe this is what the brokerage is for - working out which private health provider in your area has the contract for the work you want.

I see the Special Educational Consortium are now asking for a redraft of the Code of Practice here

It seems to me that everything that can be done to PREVENT parents ever taking control is being done right now.

I think many professional groups are terrified of genuine accountability for the "services" they provide entering the system. I'm currently providing DS with a genuine education for a FRACTION of what my old LA spent on messing him up. I'm convinced this country could provide REAL opportunities to most SN kids for a pittance compared to what's being spent now.

All those endless meetings/reports/reviews with big wigs cost a fortune, and in reality it's low paid/untrained TA's who actually determine the outcomes for the majority of kids.

bochead To be brutally honest independence is the ONLY way to prevent the taint of corruption ruining services. The state sector is not only rotten from top to toe, but it's tentacles are now in the process of destroying the charity/3rd sector too.

I couldn't agree more Who can parents turn to when the charity3rd sector is compromised?

Zzzzz, my ds has a dx, a statement of useless provision most would envy. He's had full support in a ms school and 2 years in an independent special school.

And yet I envy your ds' provision and am likely to be in your position shortly.

The system is so very rotten I'm not sure there IS hope. Not for our kids, and only for theirs if we work tirelessly and urgently.

Far too late for I told you so's but did anyone honestly foretell anything other than what we see now wrt the reforms?

You are right Star - it was all predictable, especially in the context of the privatization of the NHS generally and the 'war on welfare'.

It always has been about the money.

YET, if they did some proper research in to where the money goes, how it is spent, how decisions are made etc, you might just see how much money is wasted.

You can't fight the whole system and win as an individual family, without the ultimate price paid potentially becoming too high. A childhood only lasts 18 years, and every minute of that time is needed to get them ready for adulthood. They got a five year chunk out of my child - no more.

When he's 55 (and I'm gone from this world) but still unable to live or function independently it won't matter if a hollow piece of paper from a court says I was right about his treatment as a child. Going down the whole legal process route would at most have resulted in a pyrrhic victory for us, given the state my kid was in last summer. I've yet to meet a professional who genuinely thinks about the future LONG TERM for these children.

As a lone parent I can only fight so many battles on so many fronts at a time. It's simpler just to get on with it myself. That way he'll be able to fight for my grand kids (his disabilities are deffo of genetic origin). The civil rights movement for blacks required a core with an education to move things on. I now see access to a basic education for children with disabilities as a similar long term inter-generational fight, despite the official propaganda to the contrary.

I agree with everything you say - and you say it so eloquently.

oh, a LOT of people are getting VERY fat off our kids! The money sloshes round the system alright, shame it is spent on everything except direct face to face work with the children it advertised as being supposed to benefit.

It's an industry. It's a wealth making machine, directing taxpayers money into the pockets of individuals using my son's name as justification to themselves and the nation.

It's a fucking disgrace!

disgrace it is. You are not wrong there!

My goal is to get DS to a point where he can tell HIS OWN STORY to the world as I think that's the only way to expose it all. He's one of the lucky ones who has the potential to be articulate enough to do so with the right help.

My reason for this is that I've noticed the BIG charities target their marketing to parents of people on the spectrum/adhd/name your poison here. (the NAS targets adult social care professionals which masks the fact they don't actually truly engage with the end service users themselves in the way I'd expect them to properly).

I concluded that parents are desperate and trusting whereas the articulate grown adult on the spectrum/adhd/name your poison here, is quite rightly cynical and would tell em where to stick the vast majority of their expenditure! (sensory rooms anyone?). This is only based on my anecdotal experiences of meeting adults with various invisible disablities over the years, (including MH).

I have wondered ever since I met DS's dad (AS) why they don't have more individuals on the spectrum in key decision making roles as DS's aspie Granny is herself a primary school teacher overseas.

I did a basic bit of anecdotal research a few years back into a few other charities/conditions and discovered the same. I stopped when it all started reminding me too much of the occasional "token" woman or "person of colour" that politically correct organisations used to have in definitively non-decision making roles in the 1970's. My disgust got too great to continue.

I wonder if any of these organisations measure the effectiveness of their interventions.

Yet they are the 'go to', easy to reach bodies for anyone who wants to look like they are reaching out to a particular sector. Get a big charity logo associated with a campaign or service and who would doubt its purpose and outcomes must be effective?

It's not just older people. DS would tell you straight away that he doesn't want half the crap that gets foisted on him in the name of intervention - if anyone would listen to him. He has now got to the stage where he says: why should I do that? Why do I need to do that? Or I don't want to do that, it doesn't help me.

Yet, as you can imagine, it goes down like a lead balloon.

But why? If it is not working for him, what is the point?

I guess they would answer that his disability prevents him from seeing that it is good for him.

A bit cuckoo's nest for my liking.

But they make it up. Because of my complaint that ds' SALT was non-existent they invited him to attend a 6 week group therapy course.

It was full of non-verbal children and ds was verbal.

After week 4 I asked what on earth the intended outcome was for ds. i.e where he was when he started and where he will be after the course. After 2 weeks of considering this they decided that his target was to improve his self confidence as a role model for the other children.

How they measured whether it was successful or not I have not idea. When asked they informed me that it was their professional opinion it had been.

Now, we appeared to have got stuck on that course (that we cancelled a family holiday to attend) to give them evidence that they were 'doing something' the next time I complained they weren't. Clearly it was bollocks.

However what was more bollocks is that I am quite certain that none of the other nonverbal children had targets and that none of them made any measureable progress either, even with the 'ds as a model' rubbish.

But we'd had 12 hours of 'intensive intervention' over the holidays. So we were discharged from SALT services for 6 months whilst ds practiced it.

WHERE IS THE EVIDENCE FOR ANY OF THIS RUBBISH?

We had similar with OT, Starlight. The boys were 3 and 5 and got put on an OT summer scheme. They were given jigsaws (we have a cupboard full of them at home) and spent half an hour with playdough (ditto). There were parachute activities (they did those at nursery/school anyhow) and so on.

And, of course, I say they were given those things - DS2 rolled on the floor and chewed a piece of jigsaw. He rolled on the floor, kept trying to escape out of the fire doors and could not go anywhere near the playdough because he was disgusted by it. We took him along to the second session to find out that he'd been disinvited, so ended up having to entertain him in a corridor while DS1 did the parachute thing. By the 4th week, I just got MIL to take DS1, while I stayed at home with DS2.

DS2 did get some individual OT, after that, but was discharged when he didn't miraculously start playing with wet spaghetti etc. We had similar when the school consulted the movement disorders service. They brought along ropes for him to walk along and when he couldn't follow the instruction declared that they couldn't help him.

So much of this stuff is generic, off the peg stuff that any parent could learn from a book - or google - and it's costing money. DS2's probably had more useful movement therapy from the 2' high wall on our high street!

The evidence is sitting in prison cells or on the lifelong welfare roles up and down the country. It's in the anti-D stats for mothers of kids with disabilities. It's logged with the tax office as 40% inputs become decades long tax credit claimants. (as so many parents have to give up their careers etc).

The evidence of failure is all around us, yet the decay continues.

My close friend however was diagnosed a couple of years back at 34 - ASD/adhd. Her Mum had tried throughout her entire childhood from toddlerhood up to after she'd had her 2nd kid of her own get her a diagnosis. In the end she got one after the most awful AS related melt down at the wrong time caused would you believe it by a caring carrot!

She was a great help in helping DS get his head round our move, and there is no way it would have gone as smoothly without her input. The caring carrots would have been having seizures had they heard the two of them nattering though - talk about partners in crime & fans of calling a spade a spade!

My 78 year old retired SN teacher Mum thinks things have gone backwards on the ground since she was raising us by several decades back to the attitudes prevalent in her own childhood. The key difference is now, money is being poured into the current system, whereas they didn't bother with that then.