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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

You are all so right

42 replies

working9while5 · 20/01/2011 16:45

I can't really post as I wish I could here, but something has happened in a professional context that has made me yet again realise the extent of corruption in The System and how it disadvantages children and young people with disabilities.

I am raising this with the very highest level of management and will see if I can take it further. I wanted to tell you this because sometimes there are voices in the system shouting out for your kids but they are not well received by those with more power. Sometimes people will appear to tow the party line while fighting the injustice where you cannot see. Unfortunately, it may not make a difference. Just wanted to say it, somehow.

OP posts:

gotchababe · 22/01/2011 11:05

The whole crux of the matter is with Education services do not tie up with Medical long term health issues of the child. They overturn everything Medical and all reports pertaining to the DC. Outwith the normal so to speak they have no idea whatsoever. I am not saying it is all their fault, as I have said in other posts it starts with the top dogs. Training, specialism are all very much needed in certain areas. You have to be your childs' voice. You have to stand up for their rights. You have to gather the determination, grit and somehow have the willpower to take on these LA's as it is only by making so much noise will anything ever be obtained and made that little bit better for the vulnerable and disabled child/adult. There are some good professionals who try to make a difference, but come up against all the beauracrats. Society is failing in so many ways, our kids are being so failed. What will the future hold for them when we are not here to protect them??

StartingAfresh · 22/01/2011 11:16

Yes, but you have to scream at the top of your voice to make it a 'bit' better. Having your child's needs met by these people is nigh on impossible.

gotchababe · 22/01/2011 11:29

Starting afresh.

I know on my own and had 11 years of fighting medical and now this goddamn LA of mine. They detest hearing my name. But do you know what I am exhausted, but I will not stop. Know why? My DS has rights as we all do, and I have to get him an acceptable quality of the life he is so much entitled to. As all and everyone is. I have to Travel 200 miles away on Tuesday just to see a suitable special needs school that may be suitable for his needs. My LA aware of this. Hang in there, make as much noise as possible, you will make a difference. If we all stick together 'we will all make a difference' x

StartingAfresh · 22/01/2011 11:46

Thanks gotcha It might sound like it but I'm not defeated at all. If anything I'm more determined because I thought stupidly that justice would be done, good would rule over evil but what I was fighting before was the tip of the iceberg (lettuce) with rotten roots and even if I HAD won I'd be fire-fighting for the rest of my life.

I am SO lucky that 'despite' them all my ds is doing okay. It needs carefull regular assessment and intense input to pull him back on ocassion which leaves me with too little time to get a job, but just enough time to use what I have learned to try to make a difference at the root.

I am very scared indeed of what this government means, but shaking up LA departments and making them fight for their jobs holds them accountable at last. The SEN laws still stand and parents can use them to get better provision because LA's cannot possibly meet demand or the law themselves, giving parents more power to demand alternative services.

tryingtokeepintune · 22/01/2011 11:55

Thanks Working - I have always appreciated your help and found your posts very informtive and helpful. It is depressing the situation you find yourself in.

One of the problems is that the LA Officers forget who they are working for. They seem to enjoy the power they hold etc. The head of one of the special units told a friend of mine she was lucky to have her child in the special unit as 'so many people want to get in but can't.' The manager is one of the people who sit on the panel to decide who gets in these places AND THERE ARE SPACES. We think there is an agenda to get rid of as many special schools as possible... AS my friend almost replied, ' You are so lucky to have the job and the power you have now because of our disbaled children!'

auntevil · 22/01/2011 12:30

What i find most worrying is that we are all well educated and informed and prepared to fight. It chills me to the bone that there would be many out there that do not have these talents. How many more are being routinely failed as they don't have an advocate that is strong enough for the long haul?
Those of us on here are unfortunately just the tip of the lettuce.

WetAugust · 22/01/2011 13:21

How many more are being routinely failed as they don't have an advocate that is strong enough for the long haul?

Excatly what a Connexions advisor said to me.

Our children are the 'lucky' ones - other parents may not have 'the means' to battle in the way we do. they may not even know what they are being denied. I didn't even know the SEN COP existed until quite a while into my individual battle (pre-internet).

That's why spreading information, as we do on this board, and sharing experiences is so valuable.

My DS is 'sorted' now. But i still come on here as I gained very valuable experience and insight during my own struggles and know that I've helped at least 3 other people get the help they needed for their own children.

justaboutfrayingattheseams · 22/01/2011 13:34

This reply has been deleted

Message withdrawn at poster's request.

StartingAfresh · 22/01/2011 13:37

What frightens me is that even a good deal of the well-educated and resourceful people get shafted.

It isn't always a matter of being resourceful or clever enough. Sometimes the computer just says no.

Having hope still in the face of that is a challenge I never imagined I would have.

WetAugust · 22/01/2011 13:37

And this may be one of the more positive consequnces of the recent publicity started by 'our frind' - more parents will find this site and realise that they are being denied and will get the support to launch their own battles.

Spread the word.

tryingtokeepintune · 22/01/2011 13:46

It is an education system that seems to allocate success to the system and blame failure on children. Was talking to a SENCO of a school who said that children, not identified as needing extra help, come up to secondary school on P levels so why am I worried that my ds is only on Level 1.

Just can't get the message through that if a child is capable of learning, then the child should not be on that level. On the other hand, if the child is not capable of learning, then what are they doing in a school learning history, geography etc when they could be learning life skills...

StartingAfresh · 22/01/2011 13:54

LOL - course, I was counting myself as being well-educated and resourceful. It is possible I suppose that I am neither -

StartingAfresh · 22/01/2011 14:09

gotcha I just realised you're new!

Hiya. Welcome to MN. Hope you stay. Get the feeling you'll fit right in.

daisy5678 · 22/01/2011 14:09

I am resourceful and educated and 'in the system' and I still feel crushed on a weekly basis by the sheer impossibility of getting the basics right for my son.

Tis shite.

gotchababe · 22/01/2011 15:51

HI to everyone,

Yes I am new on MN and intend on staying. Found myself in the 'system' so to speak 11 years ago and nothing has got any better. My DS will always be my utmost and main priority. You do feel crushed. You feel deflated. I was a professional person and had to leave my job to be my sons fulltime 24/7 carer. The strength we have has to be used to help other parents/carers in our situation. If your seen to be coping your left. If your not coping or ask for help your left. The resources are not there your told. WHAT IS THERE, I ASK? You have to be resourceful and advocate for your DC. They cannot do it for themselves. This Government need to take on board this is a vast issue concerning Carers' and ensure and oversee LA'S ARE using their budgets and implementing much needed services effectively and correctly.

Agnesdipesto · 22/01/2011 16:39

Someone at my work (who is new) actually used to be an SEN officer I am circling her warily but I agree she actually seems very intelligent - I think she left because she did not have the stomach for it anymore. I would dearly love to know how much choice SEN officers have or whether they are just doing the dirty work and actually are told what to do by higher up.

But then I have to ask myself if I did that job whether i would make decisions I knew were unjust and based on lies, ignoring need to meet the budget and I know I would last 5 minutes in such a job because I would be shouting from the rooftops that my job description did not involve breaking the law and shafting vulnerable children.

'I was just following orders' is not much of an excuse.

I also think they should be made to spend time with children with SN as part of their ongoing training so they actually understand who they are working for. I would dearly love to leave DS and my SEN officer alone in a room for an hour and then have her write a report saying his needs are minor and he has typical behaviour.

StartingAfresh · 22/01/2011 17:02

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