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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Disability Social Workers

113 replies

OoopsOhNo · 12/08/2023 08:22

When you have a severely disabled child, you are eligible for a bit of respite. If you need anything above the bare minimum level of respite, you usually need a social worker.

What this means, in some areas, is even if you have done nothing "wrong" as a parent, to get any rest you need to:

  • Agree to be on a Child in Need plan (and go to meetings)
  • "Safety score" your family at every CiN meeting, and believe it or not there is a right answer as '8' means you don't get services and '5' is child protection enquiry. Professionals also score you.
  • There is a note at the bottom of the CiN that says although it is voluntary, if you "disengage" the LA can choose to step it up to a Child Protection matter.
  • Agree to visits of your home (usually every 6 weeks) and you have to show them your child's bedroom. There is also a little box on their forms which asks if they have seen the child alone.
  • Tell every hospital you take your child to that they have a social worker.
  • The schools treat you differently (sometimes there is a big advantage to this, for example our schools remained open during strikes to children with social workers) but sometimes it comes with an extra level of sort of concealed monitoring that you can tell is safeguarding tick boxes.
  • They haven't with us, but they can and do make comments about parenting which wouldn't meet the normal "thresholds" for intervention. I know MN always says Social Care don't have time for this, but perhaps there is an exception for people already open to them?? I have several friends who have experienced this.

I hate it. It is completely humiliating and it makes me just want to run away from it all (which of course we can't because we have a social worker...) Now, I understand some of the reasons - in theory - why it's like this (disabled children are particularly vulnerable to abuse) but it also feels like using a risk factor to exert coercive control over parents who happen to have had a disabled child.

I also know many parents who don't ask for extra respite because they don't want this.

AIBU to think it shouldn't be like this?

OP posts:
Original poster
OoopsOhNo · 12/08/2023 08:23

TL;DR should families with disabled children be able to get adequate respite without a social worker?
YANBU - yes
YABU - no

OP posts:
LittleMG · 12/08/2023 08:30

That sounds awful. Demeaning. My son has a mild birth injury I could easily have been in this position and no I would
not like it.

Original poster
OoopsOhNo · 12/08/2023 08:41

LittleMG · 12/08/2023 08:30

That sounds awful. Demeaning. My son has a mild birth injury I could easily have been in this position and no I would
not like it.

Demeaning is a really apt word.

For a while I asked to stop being under social care even if we lost the respite. It was fine for a year then eldest DC became ill and we were exhausted. We have multiple disabled children.

OP posts:
Soontobe60 · 12/08/2023 08:46

I do know of several families via my role as Senco where they get respite, some regularly (ie 1 day a week), some intermittently (ie 2 weeks a year). Yes, they have a named SW, but they don’t have this level of intrusion.
I would assume that there needs to be some level of SW input if a family need such a degree of support, which is what respite care is. Perhaps there are different practices in different local authorities.

Original poster
OoopsOhNo · 12/08/2023 08:53

Soontobe60 · 12/08/2023 08:46

I do know of several families via my role as Senco where they get respite, some regularly (ie 1 day a week), some intermittently (ie 2 weeks a year). Yes, they have a named SW, but they don’t have this level of intrusion.
I would assume that there needs to be some level of SW input if a family need such a degree of support, which is what respite care is. Perhaps there are different practices in different local authorities.

There are different practices in different LAs, if we moved 2 miles down the road, it's not nearly this intrusive.

In fairness to our LA (something I rarely say) our DC have an exceptional level of need. BUT I still don't think it warrants this, and I know of lower need children whose families get the same treatment.

Surely the LA would be able to catch and support the families who need it if they didn't put everyone off coming forward by having such a baseline of control and intrusion.

OP posts:
ZZpop · 12/08/2023 11:25

I have a severely disabled teenager (autism, learning disability and challenging behaviour)and in the main I have learned to let SS 'carry on' wash over me. A lot of disability SW are pretty clueless about parenting a disabled child and are old fashioned/ not up to date in the best way of supporting the child's needs.

Original poster
OoopsOhNo · 12/08/2023 11:54

@ZZpop wish I could get to this stage. My DC are younger though so maybe I have time...

OP posts:
Daisy232 · 12/08/2023 12:11

From my experience I have found it pot luck to even get respite put in place. I'm a single mum with a severely disabled child. I have contacted them so many times, practically begging for them to help but they just don't care. The only help my child has is in school and absolutely nothing after that. I find it so frustrating phoning them constantly to ask for some help that will benefit my child and help him going forward. But it's the same response every time that you need to be living in a crisis or they will bring it up at meetings to then never hearing another thing from them. Unfortunately it seems that the children who are most in need are the most forgotten where they are concerned. I also agree with you that the whole process is wrong. It really is humiliating the hoops your expected to jump through X

Original poster
OoopsOhNo · 12/08/2023 12:24

Daisy232 · 12/08/2023 12:11

From my experience I have found it pot luck to even get respite put in place. I'm a single mum with a severely disabled child. I have contacted them so many times, practically begging for them to help but they just don't care. The only help my child has is in school and absolutely nothing after that. I find it so frustrating phoning them constantly to ask for some help that will benefit my child and help him going forward. But it's the same response every time that you need to be living in a crisis or they will bring it up at meetings to then never hearing another thing from them. Unfortunately it seems that the children who are most in need are the most forgotten where they are concerned. I also agree with you that the whole process is wrong. It really is humiliating the hoops your expected to jump through X

So sorry you're going through this, we had similar in the past, it's like the choice is either no help (even if you really need it, and are eligible for it) or they come bowling in during a crisis and stress everyone out with the intrusion and humiliation.

OP posts:
Icedlatteplease · 12/08/2023 12:27

But part of a social workers job is to assess the need for respite. You literally have complained about a social workers job. If you didn't have a social worker you would still need someone assessing for respite, which would still be intrusive whatever you called them.

I say this as a parent of a SN child on a CIN plan who has significant round the clock care needs provisioned by social services and another on a CIN plan due to the first.

OneInEight · 12/08/2023 12:28

And the sad thing is even when you are lucky enough to get a decent social worker they move swiftly on and you have to start the whole intrusive debacle again.

AlwaysAWoman · 12/08/2023 12:47

It really isn't that they don't care- services are disgustingly limited for families with disabled children. This is the reason I haven't joined the disability team myself. We can't do enough. Families are hugely let down.

BananaSlug · 12/08/2023 12:49

This is one of the reasons that I wont use respite for my daughter who is disabled as I don’t want to involve social services.

Original poster
OoopsOhNo · 12/08/2023 15:15

@BananaSlug we were like you for many years but in the end our need for respite outweighed our need for privacy (which is actually a human right).

OP posts:
Original poster
OoopsOhNo · 12/08/2023 15:17

Icedlatteplease · 12/08/2023 12:27

But part of a social workers job is to assess the need for respite. You literally have complained about a social workers job. If you didn't have a social worker you would still need someone assessing for respite, which would still be intrusive whatever you called them.

I say this as a parent of a SN child on a CIN plan who has significant round the clock care needs provisioned by social services and another on a CIN plan due to the first.

I guess in some ways, but why check the bedrooms?

Surely you can assess without all the rest of the invasions? It shouldn't be all or nothing. Look at what BananaSlug said :(

OP posts:
Original poster
OoopsOhNo · 12/08/2023 15:18

@OneInEight yup!

@AlwaysAWoman did you depend some time in Disabled Children team? What was it like?

OP posts:
wizzywig · 12/08/2023 15:50

Hi op, I've had a different experience. Yes I find it humiliating but that's becuase I feel like asking for respite means I'm failing to cope as a parent. And I know that's a me thing. If they want to see the house, they can do that. I don't care. In my mind I think I want my kids to be 'in the system' so that of the worst happened and me and dh died/ were incapacitated, then social services know my kids

wizzywig · 12/08/2023 15:51

I forgot to say, I've never attended cin meetings for myself

Original poster
OoopsOhNo · 12/08/2023 17:33

@wizzywig I felt the same for a while, but we needed the respite or we would have been seriously exhausted by now. I might stop going to the CiN meetings, I genuinely find it traumatic. I do not use that word lightly.

OP posts:
boboshmobo · 12/08/2023 17:35

I have all this and couldn't give two hoots

They come , we dance the merry dance and they go . I get my direct payments and that's that

Having a child with SN is pretty invasive tbh but it is what it is

Einevinefine · 12/08/2023 17:43

Feel for you, been through hell and back with getting help. Social Workers kept changing but one was very intrusive and then broke down about her own family life. I was traumatised and I don’t use that word lightly. It affected my other children and my marriage (we split up). It was a period in my life that went on and on (trying to get care) and I want to black it out.
OP - hugs to you 🌸🌸🌸

Original poster
OoopsOhNo · 12/08/2023 17:44

@boboshmobo I wish I could see it like this, maybe it will come. I still find myself playing performance parent, sometimes I really wish they would just fuck off but then we wouldn't get a break.

OP posts:
Original poster
OoopsOhNo · 12/08/2023 17:45

@Einevinefine I am so sorry to hear this. It shouldn't be this difficult.

OP posts:
CoffeeWithCheese · 12/08/2023 17:45

My brother is a social worker and took it upon himself to check my own kids bedrooms last time he visited my home! (He got present with our councils emergency number if he had any concerns and no repeat invites!)

OP yes the system is shit (I work in adult services from a healthcare point of view so deal with the social care team a lot) and the turnover is so high that you get a good one and they move on and the whole thing starts again. At least once you hit adult services and things are set up - they tend to leave you alone and just pay for the agreed stuff.

It should not have to be so unecessarily adversarial.

My personal pet peeve is when we are supporting clients who need to be prepared in advance for professionals visiting (and we can do photographs, social stories etc to support this) and we communicate all of this to SW who then do a random “popping by today to go through a huge wodge of information” (At a level going totally over the clients head) and really overload them to the point that behaviour escalates and things go to pot!

cansu · 12/08/2023 17:47

I don't know why you would have these hoops to jump through. My ds when young had respite and other services due to his disabilities. I did not have to attend any CIN meetings. No one had ever checked my bedrooms or given me any scores that I am aware of.

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