No one can cope with my ASD son - but expects me to carry on without support

[SilverLiningSearching]

Received a call from my DS holiday camp to come and collect him early due to a meltdown caused by an argument with another boy. DS was swearing and threatening the other boy who had made derogatory comments about me. Ds made physical threats.

I had liaised heavily with the manager about my son’s ASD prior to booking, but they are not a specialist SEN setting, but thought they would be able to cope.

Even the council run SEN centre ( which is only open very limited hours) say they can only have him for 1/2 a day.

I am a single parent, working full time from home and trying to care for DS at the same time, feel like I’m drowning. DS father is a Disney Dad who swoops in for 24 hours once a month, he even tried to deny DS has ASD.

I tell my social worker but he doesn’t do anything, sometimes DS hurts me and I dread what will happen when he’s older.

Should I ask for a different social worker? Why does everyone think I can carry on like this, they know I am on medication for anxiety and depression. I don’t know if I can cope anymore.

[SilverLiningSearching]

Sorry meant to add DS is 11, and this is the last of a long line of holiday clubs who have terminated DS place or I have had to pull him out.
I got a respite weekend last year at a SEN setting via social services- had to pick him up 24 hrs early because of his “disobedience” and he was “encouraging” other children to misbehave. He isint a monster, but we both need help.

[Lesley25]

Ask social services for a reassessment urgently. Detail everything and if needs be ask for a different social worker. SS have access to agencies Who provide carers and respite. You need help and support so please don’t hesitate.

[Lesley25]

I’m surprised that SS didn’t feel the need to provide alternative arrangements given last years experience. If anything this proves your son needs a higher staffed specialist provision for holidays. And tell them that too.

[SilverLiningSearching]

Thank you @Lesley25, the issue is complicated further as I am appealing against LA regarding the school named on my son’s ECHP.The SenSap caseworker and my SW know each other and appear quite chummy. Since I lodged the appeal the SW has certainly cooled towards me, nothing I can prove though.

Do I ask for a reassessment via the disabilities team or via the duty desk? I sent SW an email today stating that I feared I would be sectioned if I continued to receive no support.

[Lesley25]

You’ve sent the email so now you call the desk and explain to the duty SW, that’s usually the emergency social worker desk.you need a response now and sound sharp when you say this. I don’t know what a sensap is? Senco?
If so, they’re usually chummy and work together anyway.
When you call at that point also ask for a reassessment and a new SW .

[Lesley25]

The educational element is separate.
You should have pip payments for your son since he cannot access mainstream clubs and you need respite.
This comes in the form of money for hours For you to hire carer or carers or accessing a suitable provision. SS have access to agency staff that can do this. This also helps your educational fight because of other provisions cannot cope it’s all evidence as to why he needs a specialist provision.

[SilverLiningSearching]

The SENSAP is the LA SEN Caseworker who drafts the ECHP. I even felt in one of our meetings the SW was pumping me for inside info regarding the appeal; I was deliberately vague. So no trust there.

SW has been dangling the carrot of PIP , offering us for 4 whole hours a week. Keeps saying He has to run it past his manager, think we need a lot more than 4 hrs.

Will contact the duty and send them the evidence.

[Lesley25]

This sounds like my SW. in reality they must have some sort of job sheet with the phrase “I need to speak to my manager”
When in reality it’s their report that decides it.
The 4 hours should be in term time, holiday time should be more- mine was 7 it’s now 12. Plus specify whether it’s 2 adults that need to be with your son, that changes everything. In reality, if your son needs such intervention at school, for safety i would say he needs 2:1 for the caring hours. It’s I’ll also be a lot easier to get Tas from school or agency staff if they’re working in pairs, one is a driver, 1 is with your son in the back.
Really hammer that point.

The dangling of the carrot I’ve experienced many a time. The minute I mention “tribunal”for educational purposes or with SW saying I’m going to have to seriously think about care (not an exaggeration in my case), suddenly everyone starts listening.
PM me if you need any help. I’ve been here I can help you with the red tape. And the BS you might hear.

[wagtailred]

I dont have any advice. Just wanted to wish you luck. We cant access any holiday care. Its a nightmare. Our LA does this stupid bidding /applying system and you end up 1 day a summer at a charity over the other sidd of the county for instance.
In terms of your son hurting you, have you looked at anything by Yvonne Newbold? She has lots of good tips on violent /challenging behaviour at home.

[SilverLiningSearching]

SW called today, I asked him who would look after DS when I have a mental breakdown, would he then go into care?

SW said they would look for a family member to look after DS before putting him in care ( good luck with that!) , SW is going to contact DS father to tell him to step up - he hasn’t seen DS since June, SW thinks he should take DS on a holiday to give me a break. Nice idea, but doubt it will happen.

SW said he will talk to the Panel about upping Direct Payments, but I need to find someone to employ as a carer, it’s take the council too long apparently..Don’t know anyone who would be suitable and capable though.

Spoke to a local charity and they told me about a respite facility where children like DS go for a weekend to give the parent(s) a break - why did the SW not raise this?! The charity are contacting SW directly to recommend we are referred there.

[Lesley25]

Agency’s can help with caring for your son and the LA or the sw will have agency’s on their books, they might be full but you need to know who and where you can contact them. saying that- do you know any TA’s from your sons previous school that would do structured activities with your son? Think about the daily rate that you would employ them at. First things first, you need the direct payments to go through and the sw should be pushing this through as a priority.

Speaking to your childs father is something I’ve never heard of social workers doing.

Also ask your LA if they have any funds like a short break schemes for children, this could be another avenue to explore.
Do you have sen holiday clubs? Again LA will know of these. If you have any in your area could approaching those individuals to ask if they might allow you to advertise for a Carer from their pool of adults?

The red tape surrounding all of this annoys me. We are supposed to be working, looking after our children W ith these additional needs and then finding out and scrabbling around for any help. There’s no direct manual out there that says do this , then access that etc. Some LA’s are really good and have a learning disability department that again you can self refer to and you’re sw might be aware of. Google clubs in your area, it’s another pool you can access for advertising for a carer. I only found my sons carers from his special school and paying them well whilst I structure the activities for a set period of time (3 hours 3 times a week) is how I’ve managed (just about) to keep my son at home. I know this won’t be the case forever, but for now I’ll take it.

[SilverLiningSearching]

The local charity have been on to the SW. miraculously I have now been offered agency support and a referral is being made to the weekend respite facility - the one that I didn’t even know existed until the charity told me.

DS has been to a LA SEN centre, but they couldn’t cope with him.

Our LA likes to talk the talk About SEN, but in reality they are shit. No transparency of how to access services, or what is available.

[Lesley25]

I’m pleased you’ve found something.
LA sen we don’t have, they just have a list of agencies and a disability dept that honestly is a bit rubbish, but it all adds up to my pile of evidence that I’ve accessed the support out there.
Please ask the charity If they have a pool of adults you could tap up to be carers even in term time, one sat morning a week to take your son swimming and for some food if he can or wants to do that would give you some respite.
Sw will carry out the DBS check for you and the hours they allocate in direct payments could help towards it, plus it might be good for both of you. If you need any help with the setting it up I can guide you through it.
I hope it goes well x

[Niffler75]

It shouldn't be so flippin' hard to get support should it! 😡 Well done and let us know how you get on! 💐

[windsorblue]

Your local authority should have a local offer webpage that should give you information on local groups and charities.
Also look up contact a family they may have a group near you they have loads of information on their website.

[DarkMintChocolate]

Yes, the LA can and will call a SW as a witness against you, if it comes to a tribunal for say a residential school - even if the SW agrees with you! Their job is on the line! One friend, a SW told me she wrote a report recommending a residential school - her manager was apoplectic and she thought she’d lose her job! After about 2 weeks, it all seemed to blow over!

The SW writes the report, but it is quite possible every decision for funding goes to “Panel”, so the decision is out of their hands.

My LA and CCG use agencies to supply care workers to parents.

Have you had a carer’s assessment? If not, request one now! While it’s going on, ask SS what their contingency plan is for DS, if anything happens to you? If they assume other relatives are going to step in, they should contact them and get their agreement before it becomes necessary.

[SilverLiningSearching]

Thank for all your support and advice, it is difficult for me to process it all at the moment, but it’s great to have new strategies.

The SW Said today that he is preparing to plead my case to the Panel. It did help that he contacted DS father and discovered for himself how completely fucking useless he is, but I have been telling them for years and they haven’t listened.

@DarkMintChocolate that is scandalous , but I’m not surprised, My SW clearly doesn’t want to get involved in my appeal. Our SENDiAS are not as impartial as they make out either- but that’s a whole different thread!

[BoobsOnTheMoon]

I totally feel your pain

I have a 10yr old who has had 3 failed school placements due to his challenging behaviour, and an EHCP saying he needs 2-1 specialist adult support for most of the school day.

Since the last school placement broke down, I've been expected to manage on my own. No respite, no holiday club, no days in school. Fucking nothing. No carers assessment, as the organisation that our LA contracted carer services out to went bust at the start of lockdown. No disability social worker as my child doesn't meet their threshold because he sleeps at night so that's all the break I need, apparently

I work too, but the only advice I've had is that I could claim carers allowance if I gave up working (not bloody likely, work is the only thing I do where anyone tells me I've done a good job!).

It's shit isn't it? And people not in the system just can't comprehend how shit

[DarkMintChocolate]

If I were you, I’d ask SS where it says in the law that if a child sleeps at night, they don’t meet the criteria? I suspect it’s their own unlawful policy, with no basis in law?

Do a search on Special Needs Jungle on Google, for a recent article by Prof. Luke Clements on this area of law.

[DarkMintChocolate]

www.specialneedsjungle.com/autistic-children-unlawfully-denied-care-assessments-your-parent-carer-group-can-help-further-research/

[Niffler75]

@darkmintchocolate I read that report too. Some Local Authourities, according to this report seem to have their own local policies that may be a breach of the Equalities Act.

[DianaPoz]

Hi would it be okay to message you ?