AIBU to expect more from LA for disabled child?

[helpfor]

Hi everyone. Writing as a very concerned friend. My friend has a disabled DS (15mo) and is really struggling. She’s seems to have hit a brick wall with help. Without being too outing as his condition is so rare, he has dystonic cerebral palsy and a severe form of brain damage. He cries. All the time. He does not sleep. I’ve known this child to sleep a couple of hours in 24 hours. There’s no routine for them because of this.

He’s on a waiting list for Portage services but they won’t do an EHC plan until he’s two. She has hit a brick wall with social services as they have said he is “too young and too complex”. She’s not sitting back quietly, she is fighting but it really doesn’t seem to be working.

They don’t qualify for benefits due to her DH salary (but as she doesn’t work because of DS complex needs, they are nowhere near well off and often struggle).

DS son’s needs are complex and rare enough to the point of having a GoFundMe, and although the amount raised is substantial, it doesn’t touch the sides of the physio and other therapies he needs.

I’m really worried about my friend because I can see her declining before my eyes. She’s not slept in days, WEEKS, it’s like having a newborn for months on end, with no end in sight. The sleep deprivation is a form of torture in itself but also during the day he will not settle and will cry endlessly unless she carries him (she has a hip thing / carrier but he is a BIG boy). This is also putting stress on her body.

We and other friends try to rally around where we can to take the load and her family help too but there is only so much we can all muck in because the care and attention is CONSTANT, like you cannot put him down or switch off for even 10 seconds so even a few hours ‘off’ and they’re straight back to it.

What they really want is a carer or professional to step in. A night nanny would be amazing - but the cost of this is astronomical and not in their budget.

It’s got to the point of desperation where she is walking out of the house in the early hours to get away from the crying (putting him down safely) and talking about putting him to care. I’m so scared she might do something to herself or him through utter desperation and sleep deprivation. She is already having hallucinations.

I just need to know :

AIBU to expect more than they’ve been offered (nothing lol).

Am I right in thinking there’s no other help available for them that can be offered by a local authority?

Surely she can’t carry on this way until he’s two? And even then what’s the help offered?

Has anyone had experience of an extremely high-needs disabled child and what help you received, or simply how you got through it?

How else can I support? I try to bring food, look after the child for a few hours to let my friend sleep, go round to just offer support, go out for dinner with her while her DH looks after him etc (I also have a v young child so my time is stretched).

I feel helpless, so god knows how she feels. Any advice welcomed.

Yes, there are next to no resources and if you do get respite hours, finding someone is another nightmare.

DLA should be fairly cut and dry so definitely get on to that as that then opens up carers and potentially UC.

No one has any idea how limited help is until you need it.

I’ve been this person. I had a severely disabled dc and was drowning. I contemplated suicide numerous times and would have been so grateful to have a friend like you.

We hired a nanny 4 days a week when dd was 9 months old so I could go back to work and have a break. It was life changing for us. She was trained in all of dd’s conditions and treatments etc. Could this be an option for your friend or does she want to stay at home?

We also had respite care offered by social services but declined, and a care package for night carers 5 days a week (but this was specific to dd’s condition). We received higher rate dla. I am appalled that your friend isn’t getting more support. Is there a local charity that provides respite (probably at a local childrens’ hospice)?

Obviously people have mentioned DLA, she should absolutely apply for this.
Also a social care assesment as a carer.

There should be a SEN local offer department, my own is called Brighter futures for children, they will be linked to the LA and can sign post to resources she may be entitled to.
Ours has lists of local nurseries and child minders with SEN training, she can also access these through any community paediatrics, OT or SALT evolved in her sons care.

I have known people surrender their children to SS, there is no shame if you get to that point imo and often the care needs will be implemented a lot quicker, you do not have to surrender your paternal rights to do this, although I am sure it is a difficult choice to make.

She can apply for dla now, the criteria for under 3's is strict and relate to the extra care he requires over a typical child of age. Social services would be the other statutory place to get support in the form of respite. If he is considered life limited the local children's hospice may be able to provide respite (you don't have to be end of life) and there are charities too that provide help. Finally once dla is in place she will qualify for carers allowance, it's not a lot of money but it's something extra.

It's very hard navigating the system, I'm just filling in the annual deputy report for my adult dd currently, a thankless bureaucratic task! But there is help if you are persistent and look at multiple avenues

If your friend phones up to apply for DLA they backdate any payment awarded to the date an application pack was requested. Helping her complete the soul destroying form would be a fantastic help - Cerebra have a guide to help you complete it.

This happened with a friend's child. I helped out as you are for the first year but then had my own child, was back at work and my time was more limited. Similar with other friends offering support - you can keep it up for so long but there comes a point when everyone is beyond exhausted.

He ended up taking the council to court to get care paid for - it was crazy, the child was assessed as needing a carer there and awake 24/7 yet SS were absolutely fine with the child being at home in a single parent family with two other children!

It's absolutely disgraceful how little support there is out there. And, yes, I do bear this in mind when voting.

I have a profoundly disabled child . We couldn't access a lot of services until she was 2 or 3 ( it was a long time ago ) I don't think we could claim dla until after the age of 3 but my memory is a little effected now from years of not sleeping properly . You aren't being unreasonable expecting more support from services , but she is unfortunately not very likely to get it. My advice is that she joins a few Facebook groups for children with severe disabilities, we all advise each other, support each other, try to find loopholes in the 'system' that might get our children and us the support we desperately need. My daughter is nearly 20 and it's only since she's been moved on to care fully funded by health, rather than social services that we have had any support worth having.
You sound like an amazing supportive friend and that will go a long way, sit with the baby so she can have a nap, any hands on practical help is always great. For me it is is still like caring for a newborn with multiple additional complex medical problems but you DO adapt to the sleepless nights. It's a very hard life and I know that's not what you are hoping to hear . I think she will also be going through the grief for the life she thought she would have with her baby and the totally isolated feeling you experience . The pangs still catch me off guard every now and then even twenty years on. Just keep being there, help her get shopping , help to hospital appointments etc . Cerebra is a good charity to turn to for advice and support. I Wish her little one the best of health possible and I wish I had friends like you all those years ago OP 💐

Thanks everyone for your messages. Apologies for the delay, probably a bad idea to post Saturday morning then head out for the day.

To answer a few questions:

Location - we are all in Berkshire
EHC - so the child is actually in nursery with 1:1 carer a couple of mornings a week. However, no plan as quote: “Will ask again but the nursery aren’t putting one in place because he doesn’t have a community nurse term or some nonsense”
DLA / Carers Allowance - social worker is doing this, apparently. Is it a particularly long process? I would ask what’s taking so long, any light shed on how long it all takes?
Continuing Care - she said quote “social worker is doing it but I find it unhelpful as they have come back saying he’s too young for services but we will continue to assess him”
Portage - yes will suggest she complains about the wait for this
Social Services - yes, they would be looking for respite. When I say the child doesn’t stop crying, I mean he never stops crying. Whoever looks after him has no opportunity to sleep and at the moment its a rotation of her and her mother (with DH helping where he can with the restrictions of full-time work)
“Too young and complex” - yes I agree with another poster on this, I think a lot of services are for older children and complex, when I say this type of brain damage is rare, it’s RARE so no one appears to know what to do.
Cerebra - thank you so much to those who suggested this, I’ve passed it on. Looks like they have advice on sleep.
Home OT assessment - yes it’s been done
Sleep - no one is helping with sleep, think why they want respite so much!
Home Start - good shout, suggested
Scope - will also check out!
Emergency foster / short-term foster - this could be an option, I will gently broach
Children’s Hospice for respite - will also look into this
Blue Badge - they have this
Nanny - tbh I think they would go for this, it’s just the costs involved!
Voting - don’t worry, I haven’t ever and would never vote for these thick as mince people in ‘charge’

It’s just so shocking, they keep hitting a wall and having to explain their traumatic story again and again it’s just a nightmare.

Re, being a good friend: thank you all. It’s crazy because SHE is such a good friend, despite all this and always has time for me and my minuscule in comparison little problems. Just wish I could do more!

I haven't heard of a social worker doing the dla form. I would suggest she does that herself asap. Call up for the form as then they back date from that. Then she can apply for Carers Allowance.

Unfortunately it's relentless in pushing professionals, sounds like nonsense re the ehcp but obviously I don't know the details.

Parents do the DLA Form, nothing that the social worker needs to do. Call and request a form.

The parents can apply for an EHCNA themselves. IPSEA have a model letter you can use. The child doesn’t need to have a community nurse.


Actually submitting a DLA form is quick. There is a back log for DWP to make a decision on the claim - usually takes a few months. @Busybody2022 social workers sometimes help parents apply for DLA, especially when DC hav3 complex needs.

Unfortunately parents have to keep on at professionals so your friend should push the social worker for more support (it may cost more and be more difficult to arrange but support/respite can be provided for young and complex DC) and about continuing care funding (DS is not too young).

The paediatrician should be helping with sleep. If it is beyond their experience they can refer to a sleep clinic, if necessary a specialist sleep clinic. Did the home OT assessment not look at supporting sleep?

Too complex means continuing healthcare. If the need is a primary healthcare need then the NHS will fully fund the care. It would not be social services responsibility to fund the care.

As Hatgirl says social services can’t lawfully provide healthcare. So writing to the Director of Social Care, MP and Ombudsman won’t help as not actually their statutory duty.

Get mum to apply for DLA, not through SS.
"too complex”. Is nonsense. Put that it in an email and get it recorded that someone said it. Disgraceful. She's going to have to push, hard.

I have one with significant physical disabilities that required constant around the clock care when young. They were in hospital for several months after birth and as part of coming home the hospital arranged a service to attend. It was staffed by trained volunteers (seemed to be all grandmother/retired age) and they would come for few hours each during the day and swap over. They were only for that child though, strictly 1:1, not ‘general’ childcare.

We were also allocated a 1:1 nursery carer when they were 2 or 3, can’t recall now as so long ago. Someone else had to step in when they had their breaks.

It's fine to let a social worker complete the DLA form. Those forms have to be filled in in a particular way or the claim will be turned down. It's best to get help with them so you don't have to go through an appeal. Plus it gives more weight to the application when a professional has filled it in.

She may struggle to get DLA under 3 (we couldn’t) but she can try. She will have to show why the care needed is excessive - because they will say all 15 month olds require lots of care and support.

Too complex may suggest that social Services think the support should come from health. It the care needed of a medical nature? If the condition is a life limiting a hospice may be able to help with respite. GP or paediatrician or other hospital consultant may be able to help with referral

We did get respite from age 5 and overnight respite from age 8, but that was under a Blair government and it was just different then tbh.

Has she applied for hospice help we're she can get resbite ? Il be really honest Iv got 2 children who are severely I'll, I get no help or support and been told by SS 7 times that I don't need help when I'm literally begging, I rang the police on myself last week, asked them to refer me an supprise supprise. They've already been into my kids schools... it's fucking wrong I had to do this but I needed the help, I am at breaking point as they don't sleep either and their needs are so demanding I really need advice and help. I Duno if doing this would be worth a try for her but definitely claim the benefits like others have said. They could maybe pay for some private daycare so she can rest in them hours xx

Definitely children's hospice. Ask community care team at hospital or paediatrician to refer. Phone them as well to say referral is coming.

Parents do DLA form as others have said. We had DLA from 6 months.

Children with disabilities team of social services should be providing direct payments. They tried to fund a spare space at a childminders so my child had more care but no one would take DD. I found a retired nurse through our local church we lived opposite and the council paid for a cleaner to come once a week instead. This was so I could work and get a break from caring too. Was a battle to get funding but I did!

Social services are lying about him being too young! He should get care from them or CHC. It’s disgusting how hard they make it to get a care packaging and your friend is so worn down it makes it harder to fight for help. I’m wondering if it’s worth her emailing the social services crisis team saying she can’t cope and is thinking of putting him into care unless she can get some respite/care. Hopefully someone else can advice on this. Sounds like she is at crisis point and they aren’t listening. They CAN give her a care package, the fact is it’s expensive and they are cost cutting but it’s cheaper to put in a care package and keep him at home. Does she have anyone at the hospital who she can tell how desperate she is? Any kind of support there as they might be able to refer for support. I hate how hard it is for people to get funding (don’t get me started on the lack of carers so it’s hard to recruit right now too).

can you get in touch with the rainbow trust and see if he qualifies for a respite worker from them. It will only be a short period a week but they are experts and provide emotional support.

as others have said he would qualify for DLA, it’s not means tested. It’s likely he would get high rate care and then she should get carers allowance as she isn’t working.

it sounds like your a fantastic friend. I remember my friend in a similar situation saying she wished she had someone who would help with dinner for her other child and enable her to just have a shower

I would advise your friend to request a continuing care assessment through the ICB/NHS. Any involved professional can ask for a checklist to be completed. An assessment must take no longer than 6 weeks. NHS continuing care https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/499611/children_s_continuing_care_Fe_16.pdf

When I say they can, I mean if they can, I mean if he truly is too complex they can refer him over for the CHC assessment, not just leave her high and dry! Especially as CHC sometimes will try and argue a child should be funded by SS.

Chc for children has joint commissioning responsibilities by health and social care to meet care and support needs. Both are responsible