To be so fucking angry, I might spontaneously combust!

[BlossomingIntoSpring]

Or at least burst a blood vessel . I am honestly shaking with rage!

Just found out the Local Education Authority have requested that Social Services engage an Independent Advocate for my adult DS who has ASD and a learning disability.

He’s 20 and has an EHCP which goes up to 25. He has had no placement since last summer as previous placement couldn’t meet his needs. Multiple previous placements have broken down. He has no independent living skills or qualifications.

He’s basically been sitting in his room in the dark for 10 months, up all night, sleeping all day. He now now has high cholesterol from lack of activity. He needs a residential college provision with MH support which I am appealing for as LEA wouldn’t name the one I wanted. The local provision they named in December still hasn’t started because they have no one to work with him.

I can’t believe the fucking cunts are trying to say I am not acting in his best interests!

I only found out after I complained to my MP about him having no provision!

I want to scream!!

I have been fighting for years for him to get a proper placement. His MH is shot. He has no life. Totally isolated at home.

He is very suggestible so will say whatever is suggested to him. as in he doesn’t want to live away from home. He does not understand the benefit for him at a college with an on-site psychiatrist, occupational therapist, speech and language therapist, a peer group, a structured day, social activities in the evenings and weekends. etc.

Some calming words please!

Excuse my language. trying to convey a little of what I feel .

[Not so blossoming now - shrivelled more like]

I work in a local authority’s SEN team so aware I’m putting my neck right on the block here!

Really sorry to hear the relationship between you and the LA is so unhappy OP. Children with SEN certainly don’t get enough support, provision or facilities, there’s no denying this - and I doubt you’ll find a local authority anywhere in the UK would disagree.

I just want to point out that allocating SEN provision is like feeding the five thousand with two fish and five loaves. It’s so easy to see the LA as the bad guys - but you really need to be directing your ire at this Tory government for the chronic underfunding of public services.

Of course you are only interested in your child, and of course you have to fight for him to get every possible benefit. And it’s brilliant that you have told your MP how awful the situation is.

But please know that nobody goes into education in order to explicitly deny children the things they need. Nobody is gleefully rubbing their hands together tonight over this.

There Is. No. Money.

You are right to be angry, I’m angry too. We all should be f*ing fuming - but it needs to be directed at the right people.

@BridgesofMadisonfan

From my experience I absolutely believe that could act in spite and to try and worm there way out of their obligations!

Totally! It took me a few years to believe it but I’m not so naive now. It took me until he was 15 to even get him an EHCP and this battle is never ending. Honestly this has broken me.

I went cold reading your post because i have a much younger child, but already can see us on the same collision course. I’m so sorry.

The feeling of impotence is so outraging. Outrage doesn’t actually cover it, I can actually imagine where physical violence comes from now.

If I thought it would help, I would hold someone hostage so that they would listen to me about my child.

I have nothing practical to provide, but I hear you. I see you. I can only imagine you need to howl right now.

So ironic that motherhood is beatified, and yet, when it gets hard, they don’t trust our judgement.

so sorry OP. I’ve just seen the previous post about there not being enough money. I understand that. But this does not explain the fact that mothers are belittled, reported, gaslighted, and told they are part of the problem.

Two different issues, and yes, not supporting mothers IS the fault of the people who supposedly work with us, but definitely judge us.

I have separate rage for the government who are so vile in reducing provision to bare bones (or less).

Turns out rage is like a mother’s love. There’s enough for everyone.

@Maryponnips I get what you’re saying and I don’t mean to lower the guillotine but I think SEN parents have got enough to deal without pressuring the government, that’s what you and your colleagues should be doing if you know it’s wrong surely?

My LEA have breached their duty massively and broken the law. My already disadvantaged and vulnerable son has been repeatedly failed and left to suffer. Now IMO they’re trying to insinuate i have not been advocating for him.

And also @Maryponnips, again not on you personally, but how much money do SEND departments spend on expensive barristers at SEND tribunals? No parent would go through a tribunal for the hell of it!

I can sense your frustration OP.

However working in (a different) over stretched public sector, I also understand @Maryponnips

It’s difficult to read that the department you work in is malicious or has ulterior motives, when really you are just stretched to the bone. Overworked and underpaid staff; huge workloads. I disagree it’s our jobs to petition the government about it - most of us are ‘grunts’ anyway who have zero access to anyone with the power to change things. Please bear in mind we are people too.

@Iborgia Thank you. I honestly hope you don’t end up in our position. I wouldn’t wish it on anybody. All I can say that might help in the future is fight hard and loud. Don’t try to be polite and afraid of causing a fuss. That doesn’t get you anywhere. SOS SEN and Contact are more accessible for advice than IPSEA. They have both been invaluable to me over the last few years.

*@Organictangerine, I am well aware you are people too. I have never kicked off or lost my rag despite extreme provocation until now. Just emailed very professionally outlining DSs rights, often ignored.

Can you believe they only just offered home tuition after 8 months with no provision after I got my MP involved. I suppose I should be grateful for that.

I agree that an IV could be a good thing which could work out in your favour and in the best interests of your Son.

SS usually suggest an IV once children become adults.

Sorry you are going through this. It must be so stressful.

I think it’s a good thing. They want to know your son’s actual views, not his views as communicated by you. It’s important young people have a voice.

What sort of tuition?

@FrownedUpon

I think it’s a good thing. They want to know your son’s actual views, not his views as communicated by you. It’s important young people have a voice.

It does seem like it's only become important when OP's views are opposite to theirs and she's making their lives difficult (as she should) with complaints,panel, involving her MP etc.

Funny that.

An advocate is a positive for you and your son. It is their job to communicate your son’s wishes and needs, it isn’t their job to toe the line of the Local Authority, far from it.

With respect, because I truly do have an understanding of the degree of fight that is needed in situations like this, I think you have fixed on this as a slight and not an opportunity for your son’s needs to be highlighted by another person- which this is.

Professionally, we refer lots of people to advocates and for a variety of reasons. Mainly it is support to ensure the person can access what is happening and has a neutral (albeit on the person’s side) person exchanging information. As your son is an adult who is struggling to engage the LA has a duty to offer to provide this form of support. It is not an attack on you, it is a positive opportunity for your son and doesn’t remove you from any process at all.

Thank you @WakeMeUpWhenTheyHaveGone but SS did not suggest it. It was the SEN department of the Education Authority after I’d gone to my MP and submitted an appeal to Tribunal.

They could have asked for an advocate before they finalised his latest EHCP last year. They didn’t care about his views when they named the two cheaper provisions on there.

Yes, they have decided he has to change to a different one in September, not that the first one has even started yet! He’s already been through 4 in the last 4 years. So including the home tutoring he’ll have been in another 3 provisions by September. Change is good for ASD people though right and I don’t know anything.

Sending you some hugs and thoughts. My daughter has a ehcp secondary age. The dilemma of secondary not working out has been a nightmare. I think sometimes social services get involved as standard help. I don’t know your situation but yet not to panic and keep them onside. The calmer you can be the more they will listen I would hope. I hope everything works out. It’s so hard x

Hi OP.

I am an Independent Advocacy worker. I can totally understand your anger, but it might help to know a bit more about what exactly truly independent advocacy is and how it functions. Have they provided any literature for you and you DS to look at? If not, you should ask them which organisation they work for, what their experience is, and also for some background on what their role is and why they have been appointed.

Nobody would suggest that you don't have your DS's best interests at heart, and that's not why the LA would appoint him an advocacy worker. They are not there to 'suggest' things to him either, or advise him to take particular decisions or go in a specified direction. An Advocacy worker doesn't lead the person they are working with, it's the other way around. They are not advisors, counsellors, or social workers, and neither do they work to what they might perceive as 'best interest'.

This is about establishing what your DS's on views are free from outside influences. Whether that marries or not with what other people's and various agencies' views might be is not relevant. The LA will want to know what his own views are since he is legally an adult and has every right to have his thoughts expressed. All the advocacy worker will do is help him collate those and put them to the LA in the format required, it really isn't anything more complex or convoluted than that.

I also work in SS. No excuse but there is no money, low staff levels and remaining staff are burnt out. We are literally doing the grunt work. Workloads are impossible and staff at local level cannot change Government policies. It’s obviously going to get worse and it’s scary.
Please everyone vote the Tories out at the upcoming Local Elections in May and in the next General Election.

I am not in your situation but I have had to advocate for one my DC via our LEA re. their SEN. All I can say is keep fighting, writing and don’t give up.
It’s literally, whoever shouts loudest.

Sorry; I know it’s more than stressful. It is your whole life.
Virtual hugs.

I feel every word of your fear OP and I get a knot in my stomach reading replies saying oooh it’s a good thing give him a voice etc. My DD cannot speak to anyone so I have to be her voice but if pushed by any agency whatsoever she’d say whatever she thought anyone wanted to hear. She’s 18 now, had 4 years in her bedroom in the dark on and off and is now entirely housebound. I can only offer a hand hold.

Sending unmumsnetty hugs. Been there, sort of. Two kids gone through the EHCP process and all of the dirty tricks the powers that be played, to the point of accusing us of Fii.

To those who don't have children with additional needs, you would be gobsmacked at the gaslighting and corruption that goes on. As if parenting children with additional needs wasn't hard enough.

Why do they play these games? To bully people into backing down to save a few quid.

OP don't be bullied. Have faith. Contact Tees Law and get some legal advice. They offer a free half hour consultation.

@Organictangerine no bloody idea! They are sending someone round for 3 hours a day 5 days a week. It has yet to be confirmed what they will be doing with him. They’ll have to get him out of bed first though! Thankfully I WFH (I’ve had to which has affected my career) as they need an adult in the house or it wouldn’t be able to happen. It won’t last long I’m sure as I doubt DS will engage and I’m full on with a very busy job on Teams calls constantly so can’t come out and deal with him.

They’ve only done it to get me and MP off their backs.

@IdontWanna yeah funny that.

And... you're an amazing Mum. I can see that from your posts. You've got this. Keep fighting x

Yes, you’re an amazing Mum. Your Son is luckily to have you continuing to advocate for him on his behalf. Hang in on there.

Does your DS have involvement with the community LD team? In my experience the only way to get adequate help and support is to say you absolutely cannot cope and you are unwilling to house your DS any longer (even if you don't mean it ). It sounds heartless but sometimes it can be the only way to get them to make an effort. The LA will do whatever they can to get out of funding LD specialist placements unpaid family carers are the cheapest and most preferred option.

@BlossomingIntoSpring I'm really sorry .

Hang in there. I sincerely hope,and have everything crossed that this will be a good thing for your son and it'll blow up in the LEA's face.

I also work in that field myself but in admin @WakeMeUpWhenTheyHaveGone and am constantly having to work extra hours to keep on top of it to protect other people’s children as well as having to deal with all this. I have no choice. I have to bring money in for bills and also have to keep on head butting with the LEA for something I shouldn’t have to fight for and for DS’s right to a to a life! 3 other DC at home as well.

Honestly I’d look 10 years younger if I hadn’t had to deal with this shit! Lucky I don’t like alcohol. I sometimes wish I could like a drink!