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.

She could definitely apply for DLA, and then carers allowance. Neither are affected by her partners income.

Yep, DLA. Approx an extra £600 a month which is much needed. Income irrelevant.

I second applying for DLA and then carers. DH wage has no bearing on these. It would help a little.

Has he been assessed for continuing care (NHS)?

Unfortunately it’s always the risk when having children. I have a very disabled DC & my life is grim TBH. Can they not afford to buy in care if her DH earns well. I wouldn’t be relying on the LA.

As above; DLA for the child and caters allowance for your friend; these aren’t means tested and sounds like he would get higher rate care. EHCP is for help with education so it’s not necessary for him yet. With social services; what is it she’s trying to access? Respite? Can she go back to her child’s paediatrician and ask for support that way?

Absolutely apply for dla and carers your poor friend sounds like they're on their knees. It's so hard having a disabled child you never get to switch off.

I am curious about the response from social care - what does too young, too complex mean? As in too young in terms of diagnosis, assessment or for respite care?

Social services can’t back out of this one. Written compaint copies to the relevant director and Cabinet Member for social service (details on council’s website) and MP. If not satisfied with the response then complaint to the Ombudsman.

EHCPs are for anything which educates or trains a child and means education in its broadest sense, including early education. The duty applies to children from birth, not from statutory school age. The SEN code includes a section on birth to two and highlights the importance of early intervention.

OP, if your friend has the energy I would suggest she complains about the delays in portage and formally requests an EHC needs assessment, appealing if necessary. Many authorities back down in the face of an appeal and assess without it ever going to tribunal.

They can apply for DLA and subsequently carer’s allowance regardless of DH’s earnings. For DLA, the Cerebra guide is helpful.


Have social care actually undertaken an assessment? If not complain, Contact have a letter they can use on their website. If an assessment has been done, but support has been refused complain again. Has the parent had a carer’s assessment?

If needs are significant they should also look at whether DC qualifies for continuing care funding.

Refusing an EHCNA because the DC is not yet 2 is unlawful. They should formally apply, and appeal if refused. IPSEA and SOSSEN are helpful.

Have they had a home OT assessment? Is anyone supporting DC’s sleep difficulties?

Home Start may be able to support too.

That's at the highest levels and included HRM ( high rate mobility ) which the child won't qualify for untill.they are at least three ,the child may currently qualify for either Medium or high rate Care, depending on the decision maker .

She could apply for a socisl.care assessment for respite ,but ill.warn you it's hard to get
My child has severe autism and learning disabilities,he's nearly 13 now ,whilst he's physically healthy ,he needs 1:1 care at all times he's non verbal cognitively around 2 or 3 goes to a special school for children with severe and profound learning disabilities, for a long time the only respite we got was a day a week in the school holidays at a special needs play scheme ,we have recently had the children with disabilities social worker involved and now have a package of respite ,two overnight respite care in a respite home / month ,his holiday play scheme continues ,and every other Saturday ,at a weekend club
I think with a child so young if they were to get overnight respite ,it would be more likely ro.be short break foster carers.

Sorry to hear about your friends situation. I have experience of what your friend is going through. Sadly there is very little support available due to Tory government cuts to local authority budgets.

The child will definitely qualify for high rate DLA which will ease some financial burden. If they refer to the cerebra guide this will help them complete the form as they need to detail all the child's needs.

Your friend will also qualify for carers allowance if they can't get any UC due to husbands wage.

Many charities have grants for equipment and other activities which can help with financial burden.

They can try again to access respite via social worker family assessment and also if they contact their local carers organisation they may help with a review of support.

The IPSEA, CONTCT, and Scope websites are useful resources and its worth contacting SCOPE for help accessing portage and other services such as direct payments to employ a PA/carer but we were told at such a young age no help was available but that was during the pandemic so things may be better now.

In theory they can get help via social services family and a carers assessment but it's like getting blood out of a stone. 'Early Help' is the doorway to some support from the local authority but it took us years to access. Scope were helpful supporting us as the LA are useless.

There are usually are local charities for disabled children and parents, reach out as they often have links to support services and other parents to talk with.

Also they need to speak to a paediatrician and neurologist to get some medication and advice on sleep and or respite if it is as bad as you say. Scope also offer a sleep advice service but if it's to do with neuroiritability they may also require meds.

They should have a community nhs team who they will need to push for support.

If the brain damage is due to a lack of oxygen tell them to look up 'peeps-hie' charity.

Where abouts in the country are they?

That sounds tough.

I don’t think LA can help though.
Isn’t there support via hospital consultants? Is there any respite to access?

The Respite comes from the LA usually but it's limited

You sound like a brilliant friend. Any help around the home I found useful, my mum would help with shopping and making us some nice food or a cup of tea and a sandwich which when exhausted is so much appreciated.

Her husband will heed to share some of the sleep burden, even if he works it's not fair and he may have to reduce or change his working pattern as sleep deprivation with a disabled child means your friend will soon be unable to care if she is so I'll from lack of sleep.

If she goes to her GP and registers as a carer and tell them how its impacting her health that will help access support and respite.

From what OP said about the level of brain damage and lack of routine or sleep, I didn’t think the child would be in nursery yet. As I understood it, although I know all LAs differ, the child has to be in some form of education setting including nursery to be eligible for an EHCP. Brilliant if this is not the case. I was told my son wasn’t eligible until he was at nursery but he did get his EHCP just before he turned 3 as he was at a nursery part time then.

The child doesn’t need to already be in nursery or other education setting. LAs like to think they can have their own policies but the law underpinning EHCPs is the same regardless of the LA you live in.

Yes, LAs will try to gatekeeper access to EHC needs assessments but with some “encouragement” should hopefully see sense - this child’s needs sound profound, and while more needs might emerge as they age, the earlier intervention starts, the better.

This was us. SS always maintained that we should ask friends and neighbours (!) to give us some respite. (No family help.) There was no way they'd have coped with it, and as he got older it got more difficult. It was just a joke.

No statement until he was nursery age. (And then we had to fight for something which included specific provision.) SS did repeated assessments but we didn't get any suggestion of support until he was in year 5/6 and his needs had started multiplying fast. Unfortunately we then couldn't find any carers to provide the support that they gave us funding for.

Come secondary age that all went in our favour though and we were able to get the school we wanted because of the lack of wrap-around care available to us.

Ok, so what would be covered in the EHCP? Will the outcomes not be educational like they usually are in Education plans?

I would have thought your friend is eligible for carers element and DLA isn't means tested. In terms of actual support it doesn't surprise me at all. Does she have local groups, best support comes from other parents I think.

"She has hit a brick wall with social services as they have said he is “too young and too complex”

Too complex indicates that an assessment for children's continuing care is required. Children's continuing care is for children with significant health needs and packages which can include respite are funded jointly by health and social care.
She needs to go back to social care and tell them exactly how she feels.

Educational provision is anything that educates or trains and includes things such as OT, physio, SALT, hydrotherapy, rebound therapy... It could include accessing the community, play sessions, sensory sessions, staff at home… It could includes resources and equipment. Obviously all dependent on individual needs.

Educational provision doesn’t have to be delivered in a registered educational setting. It could be delivered at home, in the community, an an AP… Or an EHCP could be secured with the intention of transitioning in to a SS placement.

Education outcomes don’t have to be related to attending a nursery or other education setting either.