To tell you what life is like with a disabled child?

[FlyingTigger]

Following on from the thread
https://www.mumsnet.com/talk/money-matters/5066331-do-you-feel-bad-for-receiving-a-high-amount-of-uc

DD is non verbal and has a learning disability. She’s 6

we co sleep which means I’ve not had a good night’s sleep in years (will often wake in middle of night, sometimes for 20/30 minutes but often for and hour or 2). I’ve tried sleep training but distressed her to the point of nearly throwing up whilst crying. Also a safety thing as will happily climb/go where shouldn’t. Won’t go to sleep independently and will often wake up or cry going to sleep

Not potty trained yet. Have tried but genuinely could not care less about pooping and peeing everywhere. Like couldn’t care less! Oh and also smears her poo. Will take off her nappy or stick her hands in and rub it on the carpet/walls/furniture. This means I really have to watch her 24/7. She’s clever in the sense that she’ll often wait until I’ve got my back turned to do it!

no sense of safety. You have no idea how jealous I get when I see children her age walking happily next to their parents. I could never let her hand go even for a second.

I cannot put into words the anxiety I feel about the future. Imagine your child not being able to tell you if they’re in pain or they’re being hurt. I’m a single parent and I wouldn’t even consider a new relationship due to how paranoid I am re new partner.

Things like the support they’re entitled-her EHCP took a ridiculously long time to come through and even that was a fight. It’s not perfect but I don’t have the strength to fight. Things like SALT and OT on the NHS is abysmal. Literally a few sessions and I could have got the information off Google.

Bangs head in frustration and often don’t know why she’s annoyed. Scratches/pinches when upset

Has broken countless tablets and phone and the TV!

Sensory issues so things like clothing will
often take off. I’ve walked in on her standing naked on the window sill

Loves to tip things out eg the fairy liquid/pasta/rice or a cup
of water

I would happily swap the benefits I receive as a single mother for her health. I receive maintenance from her father but would happily give that up for him to take the load off 50/50. He can’t and won’t.
I work part time but it’s very likely my contract won’t be extended as I’ve taken too much time off when she’s been ill (wont even take Calpol and can’t blow her nose!). Her school have a breakfast club and clubs until 4ish but that means she’s likely to have had very, very little to eat (it’s heartbreaking to see how she eats once she’s home-like she’s not had anything all day). There’s also the issue of finding staff for her during this time as she needs 121 support and I don’t think the EHCP will cover that. Then there’s all the school holidays to think of! Wtaf do people do during the 6 week holidays with a SEN child who needs 121 at all times??!!!
I do not think of things like career progression or changing jobs as I will literally take anything that fits around her needs. I’ve graduated with a degree and have two masters but they don’t mean much at the moment.

I’m sure I’m missing things out but I sincerely hope this gives you an idea of what it’s like
being a carer to a child with a disability. This is just one side. There are countless others dealing with disabilities or disabled children (all with their own unique challenges). I can’t even imagine what it’s like dealing with the above but x2 or 3 children.

Carers are saving the Govt money. What would happen to public spending, if the parents just said I can't cope and abandon the child! The state would have to care for the child and that would millions. Money spent on making carers lives bearable and less tough is value for money!

So taking extremes, £3k per month going to a family with one parent bringing home a significant wage - wouldn’t be better spent providing respite for other families, or towards other services like specialist equipments. 1-2-1 TA’s? That’s the issue. The budget is finite and there’s not enough to go around. I find the argument of “entitlement” difficult to comprehend when there’s other areas of greater need that stand to benefit more.

On the one hand we accept services are poor and underfunded, on the other we’re saying the X amount your entitled to should remain irrespective of your financial circumstances.

It would cost this much a year on average: £156,847,600,000

If all carers for disabled children got £65,000 a year, and they don't then it would cost
£40,300,000,000

This would increase public spending by
£116,547,600,000 per year

And that's assuming each family only has one disabled child

But we’re not discussing a situation where the money is the difference between coping and not coping - that’s the point, if someone’s financial needs are met that money isn’t going to improve their circumstances in terms of their ability to cope and the physical and emotional tole of having a child with disabilities.

it seems we’re saying money eases the burden and I take issue with that. All the things that are hard as a carer stay hard whether the ex pays maintenance or not…

And, if our children go in to care that facility would also claim their benefits on top of the cost of staff, housing, profit etc

I am the last person to say we shouldn’t support the vulnerable in society. But support is the operative word.

I think the notion of financial support is getting tangled with other more emotive issues and aspects of DC with disabilities and that is not my intention.

Maximum DLA per child is 184.30 per week so 798 per month on average

Carers allowance is 81.90 per week so 354 per month on average

That's the non means tested element. If they also get UC etc that's means tested

But otherwise its 1154 per month for one disabled child.

Where is the 3k which isn't means tested coming from? They would have to have more than 3 disabled kids, which whilst possible is unlikely and if they did have more than 3 disabled kids then their additional costs could be extremely high.

So yes it's possible that there is some millionaire out there with 4 disabled children claiming DLA and carers allowance. But that's going to be such a tiny number that the cost of making the benefits means tested would outweigh the savings

The comments on that thread were amongst the most heinous I've ever read on here.
Absolutely wicked the way some people feel about funding people with disabilities.

I have a child with autism and learning disabilities. I also worked many years in almost every kind of care work, from mental health services to palliative care.

Do you know what, the most upsetting job I had was brain injury carer. Humbling as fuck.

A car accident, getting beaten up on a night out, a terrible fall, all these things not a single person is exempt from. Not fucking one. Life is a lottery and people may not want to fund the disabled and that is their desire, but they'll not feel that way if they're ever the unlucky person who suffers a catastrophic injury and then needs that financial support.

Care homes, specialist day centres, at home care companies etc make decent profits, often millions a year depending on the organisation, yet care staff are paid a pittance and these places are rarely council ran anymore, so someone is profiting and it isn't a single mum on universal credit. Often privately owned businesses disguised as charities are the worst offenders. Look into those scandals more, instead of blaming some poor lass doing her best with 2 disabled children. Be angry by all means, just be angry with the right fuckers.

Do you know what, I'm pretty much going to go out on a limb here and say if you think your financial situation would improve by not having the elderly, the disabled, the children who are in care or long term patients funded incorrectly or low wage earners to not get their entitlements for doing shit jobs that still need doing, then you've really not given the actual problems to much thought.

I think people are so whipped up by the media they think disabled children are recieving about half the amount of money the government has available to it in benefits.

DLA is a tiny bit of welfare spending. PIP, DLA and AA combined are less that 4% of government spending. (About 12% of welfare spending)

Pensions are 48% of welfare spending for context.

So i take the idea that they are bringing the country to bankruptcy with a pinch of salt.

As for SEN - sen incident rates are 17% of pupils now compared to 19% in 2007 (peak of 21% in 2010) so they might be more in numbers as the total school population grew, but the level is actually fairly consistent.

Theres about 500,000 children with an ehcp. This has increased somewhat, but this is in part due to increasing the age to 25.

Sorry for all the facts! But i am fed up with disabled children being scapegoated.

The reality is that most ordinary families with a disabled child need financial support.

I was sickened by some of the comments on the thread but I grew up with lots of exposure to severely disabled children and now adults.

Can't stand the 'they have something I don't get so they shouldn't have it' childish mindset.

The point many seem to miss is not that benefits should be lowered but wages should be increased. I supported the teacher/nurse/junior dr strikes but most on here didn't.

OP - I hope you're daughter and you get the support you need.

Thank you for that. It’s helpful to put it into context.

People look at me in disbelief when I tell them that my nearly 10yo puts pretty much anything in their mouth, and that I'm constantly removing Lego bricks, tv remotes, drumsticks etc from their mouth. I have to watch them every single minute of every day.

Imagine that level of vigilance. Forever.

So taking extremes, £3k per month going to a family with one parent bringing home a significant wage - wouldn’t be better spent providing respite for other families, or towards other services like specialist equipments.

You have taken the £3k figure wildly out of context - that's the amount that someone received on another thread. She earned about £700 a month though so not a "significant wage".

YANBU OP. The problem is people see posts like the one above and think that everyone on benefits is rolling in it.

The same amount of vitriol is never directed at men that don't bother contributing to their children. I have posted a few times about the fact my ex doesn't pay maintenance and it's never got much attention. People would much rather blame "the single mother". I saw someone posting the other day saying how those on benefits need to retrain, do weekend shifts, grow their own food. Yeah, because those things are so easy to do for parents with NT children let alone those with children who have significant disabilities.

The posters on the UC thread are clueless. I'm not a parent of a disabled child but a sibling of one. My father worked his whole life and my mother cared for my sister who could never be left alone and can't clean or feed herself. Yes they received benefits but the amount they received was a drop in the ocean compared to the cost of residential care. People seem to have lost all empathy. I am hoping it's just ignorance.

💐To all of us caring for our disabled children. This thread and the other are so upsetting.

We grow 70% of our own food or at least my DH does

We need a third of an acre to do so, no health problems (got him) oh and a massive amount of money because quite frankly it's not cheap! Oh and time at the weekend to do it all except that's when they are supposed to be working a second job.

Oh and then there was the person the other day suggesting those on benefits shouldn't have gardens, so where are they going to grow the damn food...

Honestly! I think some people live in la la land and have never grown a carrot in their life and think gardening is free, veg grows itself and weeding, watering, pruning, picking, preserving etc etc just magically happens

This sounds like the pure definition of hell OP. I am so so sorry. What a shit hand you have been dealt in the card game of parenting, and life. You have all my sympathy tonight.

Just sending good wishes to those of you about to start the night shift. Particularly those who have to manage tube feeds and changing pads in the night, anyone having to administer medications and those who will be up keeping their awake child safe as they move around, those who will be woken by vocal stimmimg, those who find poo smeared across the wall. And all the other night jobs I'm not aware of.

Mine is chirping some choice quotes from Bing bunny, but is at least in their bed! Good luck to all the parents for whom the night waking phase never ended.

People on benefits can't have gardens? But where will we put our hot tubs and tikibars so we can sit drinking all summer whilst blasting out ministry of sound classics from out latest iPhones as our endless packs of feral children impose on the lovely homes of those much more decent folk who work 3000 hour weeks for one of the BIG 4 and still only can afford a single chicken a month to live off thanks to Kelly from the next road claiming carers for looking after her demented grandma. Fucking Kelly. That wrongun.

i want to copy that thread every time there’s a poor frazzled mum who is struggling to have a nursery take their SEN child and some total prick pipes up “they don’t HAVE to take your child, it’s not fair on the other children.”

we are damned if we do and damned if we don’t.

You sound like an amazing mum and she is lucky to have you 🌺. This might not be helpful to you but have you heard of the Hanen programme? They do a range of courses (often run by speech therapists) to support parents and children. Also their books are great and so insightful on how you can support children who find communication difficult. ‘It Takes Two to Talk’ and ‘More than Words’ in particular are very good. In addition you mentioned that she gets frustrated. Have you thought about trying to implement a resource to help her to communicate non verbally? PECS (picture exchange) might benefit her. You can introduce one picture at a time (or more if you think she will understand) to help her to communicate with you e.g when she is hungry, thirsty etc. You can have pictures of food items that she can ‘exchange’ e.g. she gives you a picture of a banana and then you give her the banana.

@Lwrenn brilliant!

My god daughter- now 21- is non-verbal, does not communicate nor interact with others. She is in her own world, is incontinent, walks but has difficulties with it, has no sense of danger or of what is around her - she seems to recognise very little. She is very underweight, has no interest in food other than as something to throw. She throws almost anything she can. She makes noises to show her displeasure/pain/dislike about things. Literally has no ability to connect with the world, no likes/interest in anything, no friends. She went to a special school where she never made a connection to another child. I visited the school one day for work and was shown around. In her classroom she had taken herself to a corner and was just standing facing the wall with her eyes shut.
She went through puberty which was very difficult .
Her parents have devoted their adult lives to her. She is now in almost full-time care she is so severely disabled- it is called a college but is not a college. She does nothing apart from is walked and fed and 'played with' but she does not play. She can not read, does not respond to music, never smiles but does pull pained faces. She has fits, regularly, in bad patches sometimes 20+ a day.
I have looked after her often over the years to give her parents some time. I found it wearying, trying, unrewarding, exhausting, frightening at times. She never recognises me.
Her parents did not qualify for UC but had they, I would not have begrudged them a penny. The strain, pain, fear, isolation, restrictions, lack of freedom and exhaustion they have faced is etched on them.
She has eventually been diagnosed with a genetic problem caused by chromosomal damage so rare there are 3 other known cases, all girls.