Whole families on UC, PIP, DLA and carers' allowance for each other?

The local authority certainly would not pay for carers for children, parents are expected to do that

This is just not true. There are children who have care packages from the LA &/or ICB. Some are small, but there are also DC who receive large packages. A lot of these packages would be more costly if parents didn’t provide the level of care they do. Yes, many have to fight for support because LAs and ICBs often act unlawfully, but it isn’t correct to say LAs would not pay for carers for children.

DS1 has a large care package. If DH and I didn’t provide the care we do, the package would need to be bigger. DS3 has a small number of hours per week. If DH and I didn’t provide the care we do, he would need a lot hours.

Who is telling you this stuff? DD1 is currently unable to access care, but was approved for 15 hours per week, with the expectation that if it went well that would go up. Her maximum assessed contribution is £88 per week. The care was going to cost £370 per week.

If she had been given adequate provision in education, she probably wouldn't need social care to the extent that she will.

Cutting support is a false economy. Telling people they aren't disabled by changing the criteria of what is disabled doesn't make people more able. It just shifts the narrative.

She doesn't have a mental health disorder. But no, no one will give her support

How does she know she doesnt have a mental health disorder? Did she engage with mental healthcare services at all when it raised as a concern?

Some children do get funding for paid carers. My son did, 12 hours a day on days when he wasn't in school and it wasn't respite because I was there as well and counted in the numbers.
There are also plenty of disabled children that live in residential care or are at residential schools.

So there's a poster here who has ASD and ADHD. Her husband has it as well. It's genetic and they decide to pass it down and have 3 kids. I don't blame the kids for being born this way. But what am I seeing wrong?

You'll be accused of promoting eugenics...
But yes, what happened to making grown up choices about what you can manage?

Lots of adults dont get diagnosed untill later in life so its entirely possible they didnt know they had the conditions when they got marrird and had children
Also both condtions are on a spectrum and unless the first child was severly impacted it may not be apperent for a few years by which point subsequent children may have been born.

Also genetic doesnt necessarily mean its inherited.

I think this is a huge issue when discussing ASD as a lot of people just assume you give your child something you have too. A lot of the more severe forms of ASD are caused by De Novo mutations and are not 'passed down' as such and just emerge at the time of conception. They are basically chromosomal disorders that present as severe ASD with LD.

Being an older parent makes this more likely, but we live in a country where it is more and more challenging to have the things our parent had in their early 20s and also people wanting to have a bit of a life/career first, so they will put off having children.

Autism is caused by a number of de novo mutations and there are lots of different variants and genes involved, but I think the impression is it is one genetic change and a parent must also have it.

My son’s autism is almost certainly caused by his extremely premature birth.

Yep my sons chromosome deletion is de novo and yes he has severe autism and learning disabillties

a) We were both diagnosed as adults
b) The genetic links are not well understood and have only fairly recently been given much attention. When my children were younger it wasn't seen as a big thing
c) My children didn't get ASD dx until they were teenagers, so there was no confirmation that there was any ASD in the family
d) Any concerns I raised were dismissed and I was told that I was being neurotic by doctors and teachers
e) DD1's primary diagnosis is a de novo brain malformation. i.e. there is no genetic inheritance
f) ASD and ADHD are not conditions that are dominantly inherited and even if they were, the spectrum is so wide that it would be crazy for people not to have children in case they got ASD/ADHD
g) Even with a sibling who has autism, the likelihood of subsequent siblings having ASD is only 20%.

In summary, we didn't know, nobody knew, and what I did point out was stamped on, hard.

Who are you to tell people that they shouldn't have children if they have ASD or ADHD?

To add to the other posts about why you shouldn’t judge someone based on a tiny snippet of information posted online when you don’t know and understand someone else’s circumstances. You don’t know which parents raised concerns early on, before younger DC were conceived, about older DC but were told there was nothing wrong which turned out not to be correct. You don’t know who has multiples. You don’t know if DC were planned or not.

Anyone who is profoundly ableist will say it’s unfair to let a child being born with a condition that has such an impact in their life, and in many cases will not be able to work (ie being active member of society).
Its the same reason why there is always huge acclamation when science discover a way to avoid or treat other genetic conditions like Down syndrome.

Disability is seen as somethimg awful, to be avoided at all cost. So yes tyat includes disabled people not having children themselves.

(And no I’m not a proponent of these ideas too close to eugenics to me. But theyre there)

Took my four year autistic child to a pub where they have a soft play and playground. I didn't realise the play area was next to a river. You can guess what he was more interested in! Luckily we have a decent harness. 😬😄

Been very depressing not having the first days of school because your child is doing a reduced timetable whilst all the other kids have fun.

"Decide to pass it down"? How does that work?
If you have non-disabled kids, did you decide that too?

Hereditary does not mean genetic.

No these people were buying them from JD sports etc, for about £100 a time....then moaned that they couldn't afford to buy their son a birthday cake :(
They had the latest mobiles, fancy bikes, Home entertainment system etc etc.Both had never worked a day in their life and didn't intend to.The dad inparticular was more than capable of doing so, but why would he when the state was bank rolling his luxury lifestyle...

You're wrong to assume people with serious levels of disability rightly qualifying for PIP, can't also be providing 35 hours plus care for others.
Many of us have little choice.

I'm reading Mumsnet as a Waking Nights Carer for someone while they're quiet. They need continuity of breathing ensured while sleeping, to prevent blood pooling in their heart, resulting in a further life altering stroke, as well as some prompting on their self care.
They use their PIP to work, and wish to continue. (no other benefits) It helps make it financially possible for them to continue working

My carer in turn assists me to be able to remain in paid work and be able to provide night care.
What I'm doing is vital, but can actually be provided by anyone with the use of one arm,half a brain, able to press buttons, and able to stay awake.

In the future I expect AI could do the job, but right now it's done by me in a wheelchair and high level disability needs of my own.

I get underlying Carers Allowance entitlement only (so no money) because of my personal circumstances, but still have to stay within earning limits and all other rules, and am often reported by people who think either I can't do it, or am somehow gaming the system and getting paid to do it. I'm not.
I have to be in the CA system regardless of money or their rules, to satisfy legal requirements.

My carer doesn't claim CA allowance for me, as they earn over the limit. But a lower earner in the family would if it was them.
I need the care regardless of who provides it, as does the person I provide waking nights care for.

I couldn't work or survive without PIP, as much of what used to come from the NHS is gone, and many clinics closed, but I face significant extra costs of working while disabled, as well as specialist disability consumables needed to keep me going.

(Don't claim UC, HB etc. Happy for those in greater need of it to have 'mine' while I can still get work.)

I'll be done here in a couple of hours, get three to four hours sleep and then my carer will sort me out to go to work for the day.

I work both paid and unpaid, very long hours on very little sleep, and PIP (DWP) are more than aware of what I do, as well as what I clearly can't do.
The more severely disabled you are as a carer on PIP, even if not receiving the allowance, the more scrutiny you come under.

It's insulting saying those disabled enough to legitimately easily qualify for PIP can't also have to be carers, many of us have little choice.
It doesn't make us any less disabled.

Very interesting and informative post WakingNightsCarer - thank you! Although so sorry your lives are so difficult by the sounds of things. You are making an enormous contribution in multiple ways and deserve every penny of support you get!

So we are looking to India for aspirations are we ? Unfortunately for India, the UK basically takes alot of their professional and skilled workforce away every year? You like the idea of the Caste system ? The good old British Class system isn't enough misery for you?

I think you misinterpreted what I said about India. People who don't have a safety net (or benefits) have to find work whatever that might be to eat. I think that it's great we have a safety net so the most vulnerable don't suffer. However it's open to abuse and doesn't make people have to work in order to eat. There are people who abuse the system, present as homeless at 16/18 get themselves into the system of council housing and benefits and find themselves trapped in that cycle. In other countries the poorest are still aspirational as they know they will have to work whatever happens.

Thank you @captainfloaty It's appreciated.
I'm off to get my head down for a bit before I start my day.