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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

To be so fucking angry, I might spontaneously combust!

71 replies

BlossomingIntoSpring · 13/04/2022 22:12

Or at least burst a blood vessel Angry. 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 Angry.

[Not so blossoming now - shrivelled more like]

OP posts:
Original poster
BlossomingIntoSpring · 13/04/2022 22:26

No one?

OP posts:
Whatafielddayfortheheat · 13/04/2022 22:29

I'm really sorry I have no experience of this at all, but couldn't read and run. I suspect as this is quite a specialist area a lot of people, like me, don't have any experience and so aren't commenting. I'm so sorry things are so hard and I hope things improve for you and your son Flowers

Waterfordaston · 13/04/2022 22:29

Whoa!!! I think that’s actually massively positive actually and is in no way a judgement of you. If anything it’s power to your elbow to have someone else corroborate your view. I’m trying and failing to get one for my son.

Embracelife · 13/04/2022 22:32

Surely it is good? Another person to meet and listen to him?

Gazelda · 13/04/2022 22:33

I had a similar reaction to @Whatafielddayfortheheat when I read your post. Huge sympathy, but little understanding of the difficulties you and your DS face every day.
I hope that @Waterfordaston is correct, in that this might turn out to be a blessing. It sounds as though your DS needs the opportunities a proper placement could give, and you deserve to have someone fighting your corner.

tootiredtospeak · 13/04/2022 22:35

I have no clue what you mean and I say that with a 20yr old son who has ASD and an EHCP. We had a review from SS as they want to end his EHCP which was a lot of fuss about nothing as in the end they said they had other people trying to access services that needed them more ( thier words not mine). Do you mean they want someone to speak with him away from you to assess what he actually wants and needs and dont believe the provision you are pushing for is actually something he wants.

SleepWhenAmDead · 13/04/2022 22:35

Why do they think he needs an advocate?! Surely they should be focussed on getting his placement sorted. Will your MP help?

It’s so stressful and never ending.

Take care

Theunamedcat · 13/04/2022 22:39

Your right they are cunts

Do you have it in writing why their placement didn't start in December?

ThackeryBinks · 13/04/2022 22:39

Could you afford to get specialist legal advice? Sadly I think that's the best way to deal with the LEA.

Original poster
BlossomingIntoSpring · 13/04/2022 22:39

Thank you @Whatafielddayfortheheat.

Really @Waterfordaston. The LEAs reason is that they are having getting difficulty getting his views and they are not clear. He has told them on a Zoom call I managed to get him to sit in for for all of 5 minutes, and his social worker, he wants to stay in education.

OP posts:
duskyspringfield · 13/04/2022 22:39

Flowers this must be a kick in the teeth; can you get someone to clarify why they think an advocate is more knowledgeable than his parent?

justfiveminutes · 13/04/2022 22:40

I honestly don't understand why it's a bad thing for him to have an independent advocate acting on his behalf but I am sorry you are so hurt and angry.

tootiredtospeak · 13/04/2022 22:40

I just looked it up and it seems like if they are in dispute with you over appropriate care then this is what they should do under their own procedures. It does sound stressful but the person is supposed to be independent of the local care system that's the whole point.

Echobelly · 13/04/2022 22:42

Apologies for what may be a dumb and insulting question, but are you sure getting an independent advocate is a judgement on you? Have they outright said this is because they feel you are not advocating for him? or could, as @Waterfordaston said, they just be trying to back you up?

I'm sure you a very much the expert here, but it's just a quick lookup of advocates didn't seem to suggest they were there to make up for parental lack of engagement. I'll shut the fuck up if I'm wrong though!

doggyweewee · 13/04/2022 22:50

I have no experience to add I’m afraid but I just can’t believe how unfair this is. You sound like you have done your absolute best to try and advocate for him and have just been banging your head against a brick wall for them to then do this? So sorry op. Sending you strength.

Pigletspal · 13/04/2022 22:56

I understand you feel frustrated and upset OP, but I really doubt that the LA are doing this to spite you or out of some ulterior motive.

Your son is an adult, so it’s important that they get his views, you can’t legally speak for him any more, unless he’s been judged not to have capacity? The case for provision of any kind will need to take his views into account. You’ve said he is easily led, so I can understand why the LA are keen to be sure they have his views, and not just yours. It really sounds like they would be negligent just taking your word for it, when your son is a 20 year old man?

You do sound like an amazing mum to advocate so strongly for your child though Flowers

AnnaSW1 · 13/04/2022 22:57

I also don't think this is necessarily a bad thing.

Original poster
BlossomingIntoSpring · 13/04/2022 22:58

From my understanding, as DS is now an adult they have to take his views into account. Fair enough but why are they suddenly doing this now I’ve raised a massive complaint with MP and trying to complain to the Local Government Ombudsman, as part of their rebuttal to my appeal to get him an expensive placement?

I don’t think they’re doing it for altruistic reasons!

When I said that I wanted a residential placement for his benefit and mine, they immediately said ‘but surely he doesn’t want to leave home’.

Then immediately named a placement that still hasn’t got a 1:1 to work with him after I’d been trying to get them to name one for 4 months! Apparently it’s not their fault as although the placement said it can meet his needs, it takes time to find a 1:1.

OP posts:
JaceLancs · 13/04/2022 22:58

I’m sorry you are hurting but having worked in advocacy for 20+ years am concerned that you feel like this - it should be to ensure that someone independent helps make sure your DS is included in the decision making process and has a voice of his own

caringcarer · 13/04/2022 22:59

My foster was given one even though I am an X teacher and an experienced foster carer used to dealing with his complex issues. Tbh I was annoyed in the beginning as I thought they did not believe what I was saying his needs were. In the end Independent advocate agreed with me after we met several times with and without foster son. Then LEA had no choice but to implement what we had both asked for. I had been trying for almost 2 years and child's SW had also been pushing too. It might not be a bad thing. You can meet up with IA and make them see why you are requesting placement at residential school.

ldontWanna · 13/04/2022 23:04

How independent is independent?

I assume your rage has more to do with the timing of all this, the suspicions it causes and the complete lack of trust you have in them after you and your son being failed time and time again.

Even if the LEA is hoping for an easy win, hopefully the advocate is truly independent, and just like the one PP had, will consider you and your son and actually advocate in your favour. Which the LEA won't be able to so easily dismiss/ignore/postpone.

Original poster
BlossomingIntoSpring · 13/04/2022 23:06

@Pigletspal. He is an adult living in my house though, if I decide he can’t stay at home any longer, his view that he doesn’t want to go to a residential college is moot.

I’m worried I might be forced into saying he can’t live at home, then he’d be under social services care into god knows what council accommodation and I won’t have input in what will happen to him.

He is not benefitting from living at home with no support. I’ve just been left to deal with it in my own. He’ll be attending a provision 2 days a week, the rest of the time he’ll be doing what he does now and I have to deal with the stress of getting him up and out of the door. Believe me stressful doesn’t cut it.

OP posts:
Jumpking · 13/04/2022 23:06

I'm sending you hugs. I have no doubt that you've had so many years having to fight to get your son's needs met.

I share your anger and frustration that the provision for our SEN children and young adults is beyond broken.

I hope the advocate's intervention finally results in the right solution for your son. All the best on your journey with it. Stay strong.

BridgesofMadisonfan · 13/04/2022 23:09

@Pigletspal

I understand you feel frustrated and upset OP, but I really doubt that the LA are doing this to spite you or out of some ulterior motive.

Your son is an adult, so it’s important that they get his views, you can’t legally speak for him any more, unless he’s been judged not to have capacity? The case for provision of any kind will need to take his views into account. You’ve said he is easily led, so I can understand why the LA are keen to be sure they have his views, and not just yours. It really sounds like they would be negligent just taking your word for it, when your son is a 20 year old man?

You do sound like an amazing mum to advocate so strongly for your child though Flowers

I have an asd child and have had to deal with our local authority.

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

@OP My asd child is a total people pleaser and scared of authority and would agree with whatever she was told.

impossible · 13/04/2022 23:10

I have to agree that the independent advocate may be helpful and might increase the chances your DS's voice is heard and his needs are met. It is not a reflection of you but could actually work to the advantage of DS and yourself.

Make sure to talk to the advocate yourself if you can so they get a full picture.