To refuse early help referral

[Mumma2024]

Two children with ASD and ADHD diagnoses. DD 10, DS 6. DD is suffering hugely with her anxiety, it is crippling her and we are having a lot of violent outbursts. We have previously been on CIN under the disabilities team who couldn't offer anything helpful and with intrusive visits to boot.

What DD needs is to be under CAMHs, who keep refusing her as crippling anxiety is a part of autism. She's told me 3 times in a matter of weeks she does not want to be alive anymore. School want to do a referral to early help, to support me at home. What she needs is health support. In 10 years we've had a fairly revolving door of support workers/social workers etc. Who have virtually no understanding of the complex needs of both children. It is always pointless. I feel she needs proper mental health support and early help is just poorly addressing the symptoms and not touching the causes. I've been told everytime that we are well out of their knowledge set.

I feel if I refuse another early help referral then it will just be used against me, when in reality I've learnt that as a lone parent to two high needs children I have to be careful what I exert energy on and it's hard to justify exerting energy on something that has never helped.

AIBU to refuse? A small part thinks maybe it will lead to actual help but it is just exhausting.

I'm not sure what the answer is, but just wanted to say that you're not alone.

Trying to get appropriate mental health support for children is so bloody difficult, and there are so many hopes raised that turn into blind alleys.

Early Help is voluntary, you don't have to take it, or continue with it once started. I was fortunate to have a sympathetic worker, who facilitated TAF meetings for us, but generally I had more information than she did and we are out of their scope to help.

Wishing you and your poor DD all the best from another mum who gets it.

I was in a similar situation and I declined early help support as in reality there was nothing they could add to what I was already doing.
They suggested I give up my full time job (as a single parent ) to be at home with my children ! So I knew from then on we would not be compatible .
Early help is voluntary so you are not obligated to accept .

beware if you don't do what they like or take their advice they can turn nasty and put social services on to you(next step up from them really)

this happened to a friend of mine in may 2021 when the early help worker didn't like it when mum refused to change parenting style on her(EHW)assistance
mum did gentle parenting, worker wanted Authoritarian style

mum didn't want EH or ask for them but school sent them and EH more or less insisted it wasn't optional and if she refused a SS referral will be made so mum was blackmailed in to having them and when she wouldnt do what they insisted they turned nasty and actually did a SS referral

mum got to the point of Pre-proceedings (PLO) when SS did get involved(most severe stage of SS) and every time SW visited the EHW would come too

SW started saying it was emotional(wouldnt change parenting style) and educational neglect as mum was thinking about home education as she was furious at what the head did with EH(if he didn't put Eh on to her none of this would never have happened)

they did try for a FII case at one point but solicitor nipped it in the bud as kids had official diagnoses for years

they didn't go away until dec 2023
mum fought all the way as she was innocent and SW lied so much on reports
months and months of meetings, court proceedings and threats of immediate removal when mum wouldnt "do" what SW wanted
mum did start home education anyway and will continue to do so until leaving age

all this would never had happened if the EHW didn't get arsey because mum wouldnt change at her assistance

the EH put it over they are their to help and are optional/voluntary and only there to advice but they are not, they are a low end form of social services really(google it they are the first stage)
and have the ability turn nasty when you refuse

You are not being unreasonable but I understand why you're reticent.
Hopefully someone will come along with more experience

When I worked on the MASH Team (the front door to all Children's Services), we used to advise parents that even if they felt that EH wasn't right for their family, once they engaged with them, it did open doors to other services that were not available directly.

Unfortunately, over the years, and due to multiple budget cuts, and cuts to services, both internal and external, that was no longer the case.

EH were doing work far closer to CIN than they should have been (whilst SWs were concentrating more on CP work) and were unable to provide the services they were set up for.

I suppose different local authorities will offer different support and services within their EH teams, but from my experience, there was little that was available.

We had intervention from them 20 odd years ago, when we were struggling with our son's behaviour, and they were wonderful. I'd not bother engaging with them now though 😕

You can refuse early help referral from your school with no repercussions.
Do you have an autism hub or a parent support group in your area as this would probably be more helpful and will provide you with a support network of other parents in similar situations.

My children both have suspected ASD/ADHD

( I have ADHD & my sibling has autism )

For the last few years our lives have been a revolving door of support and social workers because of my DD and her behaviour

We have been on several CIN plans, the latest one was put on a CP plan, ( despite the fact this is anonymous I still feel ashamed, the CP was not down to abuse or neglect but due to the fact there had been so many CIN plans and nothing was changing with DD )

We didnt get any proper help or support until the CIN plan and now everyone is bending over backwards to help us. I love the social worker we have, she is brilliant at fighing our corner.

My dd has been rejected from CAMHs three times, despite self harm, threats of suicide, behaviour at school and home ect,

I had a letter off them in October rejecting her again. After my social worker worked her magic i got a letter last week saying my DD has an appointment with CAHMs in March!

I've got the same battle going on with DS, he hasnt even got a foot on the ladder yet

I dont think people understand how stressful and upsetting it is trying to get your kids the support they need now so they dont need support as adults

I'd reject it and hope it sparks some sort or involvement where their going to step up and start helping

As a social worker I'll agree with you that families with needs like yours are often referred to early help because CAMHS won't help and there's nothing else we can think of, so YANBU to decline if you don't think it will help. PP saying this will lead to social services referral and scaremongering about PLO are wrong and using one completely different scenario where there were clearly actual parenting issues to extrapolate to unrelated scenarios like yours.

Where I am CAMHS don't open to a family when we are open, they can work alongside but often say the young person has support so won't. Go to the doctor. Decline early help and no you won't end up with social services for saying no to a voluntary service.
As a mum of a disabled child, I think a lot of it comes down to the absolute cuts towards anything mental health or disability related. Early help teams are accepting referrals which in the past would have been refused because it's seen as better to have someone than noone (but this isn't always the case)
Additionally some sen families want to vent, some don't understand school rights with ehcps, some need knowledge of how to get on diagnosis pathway etc some need parenting programmes so it can be useful. Clearly that isn't you though so just decline. They should have even made the referral without your permission in the first place

I refused early help ,and all TAF /TAC meetings
Had one for eldest ,was a shambles
Refused for youngest
Both mine had regular CAMHs appointments.
However ..at the time of the regular CAMHs appointments,both DC were out of any education..no setting or tutor .. nothing
Once that was resolved.. actually many years later ..we were dropped by CAMHs.
CAMHS had strong link with LEA ,and every session in CAMhs was sent to LEA .
Once my kids had education they were responding to ,they were deemed not in need of CAMHs ... despite me ringing for appointments .
I have noticed this with others / friends as well

In my area, early help workers have access to IAPT, which schools don't. So a referral to Early help CAN sometimes mean earlier psychological support ( although not always!) But, at the end of the day, if you don't think it will be helpful, you don't agree. ( the poster earlier who said the school " set early help on her" is incorrect, Early Help is entirely voluntary and any referrals must have parental agreement) .

If the referral has been made I would speak to them about what other support you are putting in place. Ring around any local autism and anxiety services and find out all the information yourself. Get onto CAMHs, the school, the GP etc. about getting the support she actually needs. Explain to EH that the help she needs is outside their remit.

Have you tried looking at third sector support? In my county, local youth mental health charities are far more responsive and supportive than CAMHS. Your local Mind might be a good starting point, even if they don't offer CYP support they will likely have knowledge of who does.

Does your child have an EHCP (absolutely not saying they are a cure all) but it does sound like the ASD / mental health is a barrier to learning. I know the preference would be to have access to the right support locally, but an EHCP could be used to access residential learning with in-house therapy especially as you have evidence that their needs are not being met by the services locally. In a past life, I have helped to get students into places like Ruskin Mil (for one girl whose mental health expressed itself by starting fires and the local authority agreed that there was nothing they could do to manage hers and others' safety locally) although it did mean the family having to relent to her moving 80 miles away to go there, or Tadley Court.

You could get your local SENDIASS on board who could steer you in what to say and how, especially if local authority services are not doing their job.

I would also say, in the circumstances above, it would helpful to have Social Services on board because if they can't help with access to provision locally then again they would be the ones who fund the living costs of any residential provision. Without them, the SEND team at the LA are usually reluctant to approve residential provision due to the cost (especially if a lot of the needs are not directly educational).

If you haven't already, then SENDIASS would probably be the first people to approach for support and advice.

Finally, I'm sorry that you are in this position.

My kids school have tried to refer me a few times I’ve always refused it’s never “Gone against me” I know it’s social services and I would never voluntarily have them involved so I said no.

Hello
My dd is 9 and referred to cahms for assessment. Ask them if they can reassess for adhd.

Shes like yours violent when angry and the emotional dysregulation. She broke someone's device at school recently she said was accident however the other parent demanded I paid 300 quid left me skint and had a nervous breakdown so I feel you.

At moment we are going into school 5 min late and she's the front of q coming out and it's working well. My dd does meditation every night has done since age 5 as I also do it. She started with sleeping dragon on YouTube honestly very calming. I also spoke to sendias. Ensure you apply for an ehcp

Fidgety31 · Yesterday 23:19

I was in a similar situation and I declined early help support as in reality there was nothing they could add to what I was already doing.
They suggested I give up my full time job (as a single parent ) to be at home with my children ! So I knew from then on we would not be compatible .
Early help is voluntary so you are not obligated to accept .

They suggested that? And who is going to finance all this?

I haven't voted. But just to say I've had early help twice and both times they've been amazing and really helpful in ways I hadn't expected.
They've been real cheerleaders. Sometimes I've just needed that shoulder to cry on and pointing out what's going well alongside some rolled up sleeve practicality. They've been useful in dealing with my ex but mostly in bolstering me up.
I'd give it a go - it didn't drain me (and I know what you mean about some interactions with professionals) it really helped.

Early help is completely different to having a social worker. I was quite taken aback how much social services don’t support but the support of early help was amazing for me. Everyone seemed to listen more because I had a professional who backed me up. She also seen what others didn’t as my son masks in school and everyone started listening because she had witnessed him smashing up the house or was kicking off when she was on the phone. She was able to find us amazing support and help for my child before things escalated further and then I wouldn’t of had a choice I would of been stuck with a social worker who done nothing

When I was a full time Senco, I moved local authorities. I made an EH referral and a meeting was set up with an EH support worker and family. The EH worker didn’t seem to know what he was doing during the meeting, making some odd suggestions to the parents. After the meeting, I asked him to hang on whilst I saw the parents out. I asked him about the reasons behind his suggestions and we discussed their appropriateness (or lack of) for quite a while. It got ‘heated’.
A week later, his line manager came into school to meet with the Head and he’d put in a complaint about me challenging him. Turns out he’d been in the job a month, had no experience - the job had been internally advertised in the LA and he had previously held some other admin role - and I should have ‘given him some slack’!
luckily the Head gave his manager short shrift, pointed out we were there to support very vulnerable families and as such those families deserved the best EH support.
When allocated an experienced EH support worker, the system can work really successfully. When allocated someone with no experience, it can be dangerous.
Added to all that, services for SEN across the board are being cut to the bare bones. It’s a shocking situation.

It’s a different context, but I’ve just agreed to sign up for something that I know won’t help. I always do because sometimes you have to tick the boxes to access what you do really need.

I know what I’ve signed up to won’t help but also know that they might be able to nudge the referral I do really need.

I agree with @ConstantChangeraofNames09 above, use them as a referral tool for CAMHS and just smile and nod otherwise. My experience is from another country so not really relevant but I've never had so much reaction from services as when our respite service does it for us. Total ghost town when I ring but they're ringing me the next morning when respite contacts them for us.

Unfortunately sometimes (often), declining support that is offered is taken as evidence that things aren’t that bad. I completely get what you’re saying, you’re being offered a fork to eat soup but you know you need a spoon. Sometimes services want to see that you’ve tried the fork and it didn’t work. If you don’t try the fork they say that you can’t be that hungry….

I work in health and I see this sort of thing often but where I work, if we tried the CAMHS referral again after unsuccessful intervention from early help, it would be more likely to be accepted.

Good luck, sorry it’s so hard.

I’m going through this atm. I asked GP for a CAMHS referral back in August. CAMHS declined and we got bounced to EH and the Learning Nurse Disability team. My EH visitor was a force of nature and my LND nurse was useless so I think it depends who you end up with.

It turns out that I had to really persist with LND because that was the most appropriate way into CAMHS as an EH related referral or a school referral would have put my DS on the general waiting list whereas an LND referral put him with special autism focused psychiatrists. I really pushed back on the redundant advice the nurse kept trying to palm me off with and kept reiterating that behavioural interventions are currently not working due to anxiety and ocd. We need to get him back to a headspace where he is able to engage with behavioural interventions. I also kept a record of lots of specific examples I could refer to.

I’ve just had my first CAMHS meeting and the next step is for the psychiatrist to observe my son and then prescribe (probably) sertraline (sp?). It has been exhausting and I totally understand your lack of headspace to engage. I made that quite clear to both the EH and the LNS; I only have the capacity to engage with things that are likely to help. I have an extremely good understanding of what will and will not work right now and why/why not. But I also made it clear that I would/will engage with other strategies when my son is more able to respond to them. They seemed happy enough with that. Best of luck.

I have an ASD/ADHD child who has a lot of difficulties right now, particularly with school attendance.

I accepted the Early Help when offered. No, she couldn't stop the problems (you can't just stop ASD/ADHD) and most things she suggested I was already doing and had been doing for a long time. However, she was kind and was someone I could talk to about how I was feeling about everything.

I expect it depends a lot on how good the person you get is but I found my Early Help person very valuable for supporting me at a time when I felt very alone.

Perhaps give it a try for a few sessions. If it's not helping then there's no need to continue.