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.

I'm not suggesting she does this but hypothetically if a carer simply refused to do it any longer without support and turned up at social services with the child? They have a duty of care.

DLA/PIP, and she needs to ask social care for a continuing health care assessment. There should be a children with disabilities team. She also needs to ask for a direct payment assessment because it might be that funding can be agreed for this to give her some respite.

www.gov.uk/government/publications/children-and-young-peoples-continuing-care-national-framework

Yes but most parents of disabled children are loving ,caring parents who wouldn't dream of doing that to their children!
Unfortunately there are limited resources.

ask for respite care, through LA and through scope - this is not an unusual condition or an unusual situation

I think the NHS funds extra care for children. It does in my area. Could she also self refer to the local children's hospice for restbite? Its not just a place to sue. It's a place to live life to the max.

@x2boys

There are only limited resources because that's what people vote for.

It's easy not to be touched by this if you don't have or know a disabled child.

Have a look at the SCOPE website , they explain what you need to do to be assessed by your local authority and where to get help , they will also be able to advise about benefits etc that she’s entitled to .

What is her husband doing to help?

This.

from what you describe it sounds like many of the baby’s needs may be medical in nature rather than social care. It would be good to check whether a continuing health care assessment has been completed.

Also both totally insufficient to cover the costs involved. It's a joke. So sorry for your friend, OP.

DLA/carers allowance. Your council should have something that allows the parents to have a break whilst a personal assistant looks after the child. In my area its called short breaks.

They can't lawfully provide social care services if it's care the that NHS should be fully or part funding. I suspect this is the issue and the local authority are doing battle with the ICB (NHS) over who should be funding what.

I think as the child is so young there is an assumption that they do need 24hr care or at least a parent on call. Whilst this child's needs are profound, many parents of babies and young children are sleep deprived and essentially have no life other than that of the carer. As the child grows and a parent could 'typucal' expect a little more independence the gap will become wider and 'quantifiable' and probably attract help.

Regards finances, surely the clinical and therapeutic input the child needs is met by NHS. What are they paying for? If it's travel and their income is low enough they'll be able to claim that money back.

You are a good friend. Continue with your practical help but mostly the emotional support. If there are other children in the family, keep an eye on their welfare too.
Maybe residential care is the answer. I'm not sure I could do this.

I know this. My dc are. That's how I'm aware how many carers hit rock bottom. Emergency foster care I guess.

Your local council have very limited options to help. Your friend needs to apply for DLA (this comes from central government, not local council).

Think about this when you vote, too. Councils used to have much more scope to help, but under the conservative government this was all drastically cut and centralised.

This is why I left working in Portage. I can’t speak for every LA but on ours there’s no support from the Children With Disabilities side of Social Service until they’re 5, no special nursery places in the whole county, nurseries are full and won’t even let parents of children with SEND through the door, long waits for Portage. I’d have parents pouring their hearts out to me, at the end of their tether and no actual help I could give them. It was heart breaking and caused me to end up on anti depressants so god knows how the actual parents managed to survive! Yes I could (and did often) apply for an EHCP for them but then what?

She absolutely should be getting DLA and carers allowance though and if the child’s medical needs are severe enough they may be able to get respite through a children’s hospice.

Um,my child is nearly 13_severely autistic ,severe learning disabilities,non verbal
So yeah I do have an idea of what it's like thanks🙄

As others have said, if his needs are complex, he may qualify for continuing health care. (CHC). If his needs are felt to be primarily health he should get full CHC funding. That does, in my experience, tend to mean resources are less limited than they are from social care budget. It would also mean he would have a CHC caseworker which may mean you'll get a quicker response than from social care. A community nurse / other health professional can complete a CHC checklist ( initial assessment) so she won't have to wait for social care.

DLA is not means tested unlike carers. Also could contact the local children’s hospice to see who assesses for respite

It is very area dependent. Near us portage has recently expanded to be available from birth, and there’s extra special needs nursery places available following additional investment. It’s still small fry to be fair but it’s something.

Its likely due to his age...mostly can claim DLA and blue badge til 3 .....at 15 months many other children can't walk so expectation to carry them etc.
NHS physio will support with feeding chair etc....portage usually visit after 1 year....but too young for a LA OT assessment yet....there will be a criteria for eligibility to the childrens complex health and LD Social Work team ....if the child meets this...she could ask for an assessment...but realistically at this age , they wouldn't be forthcoming....as the needs of an able 15 month old won't differ too greatly ( in their eyes) .....is he on SENIS waiting list for when he starts nursery? Has she asked about 2 year nursery offer for children with complex health needs ( 15 hours a week) .....DLA ..
When she is eligible will help out a bit ...

Are there any local charities? What are the community paeds saying....are they supporting mum with referral to LA ?

Can't claim ( not can)

You can claim the care component of DLA from three months,s but can only claim the mobility component from three years for High rate mobility and five years for low rate mobility.

I can’t speak for every LA but on ours there’s no support from the Children With Disabilities side of Social Service until they’re 5

Such a blanket policy is unlawful and can be challenged.


no special nursery places in the whole county, nurseries are full and won’t even let parents of children with SEND through the door


Parents can and should appeal. Unless the setting is wholly independent they can be named even if they object. And being full on its own is not enough to refuse to name it in an EHCP. The LA have to prove the school is so full admitting DC is incompatible. The bar is higher than many LAs admit. It is more than an “adverse effect”, “impact on” or “prejudicial to”.

If there isn’t a suitable place there is EOTAS.

DLA is not means tested unlike carers.

Carer’s allowance is not a means tested benefit. It does have an earnings threshold but isn’t considered a means tested benefit.

but too young for a LA OT assessment yet.

No they aren’t.

there will be a criteria for eligibility to the childrens complex health and LD Social Work team ....if the child meets this...she could ask for an assessment...but realistically at this age , they wouldn't be forthcoming

The DC in the OP more than meets the legal threshold for an assessment that has nothing to do with age. Many LAs like to believe they can have their own higher threshold but they are unlawful.

You can claim DLA prior to 3. You can also get a blue badge before then.