To think there is a definite surge in annoyance towards the disabled?

[WarySwan]

I have seen it in real life. Not just social media forums and news outlets where every other post seems to be about 'free money this for disabled' and 'free cars'.

My 2 children have autism. They get highest rate DLA. About £800 a month. We get respite care funded that costs the tax payer about £700 a month.

Just had an extension on our new build house, housing association, brand new bedroom and ensuite installed. Free of charge through the council.

Motability 7 seater car. 25 plate.

People seem to just see this and see the money. They do not see the costs that are present because of disability. The amount of time and resources it takes to keep 2 profoundly children at home.

They do not see that my children will need 24/7 care for life. 2-1 support in public. The constant cleaning and caring. Waking up at the crack of dawn, years on end. Cleaning smearing and endless washing. Endless marks on your body from a child who doesn't get that taking a chunk out of you will hurt that much and scar

Watching your eldest almost die as he can't speak a word or use a communication device. Meaning appendicitis went undetected until he was almost dying. The constant battle of keeping a cannula in his arm with hospital staff just not getting why a play therapist does not bloody cut it and he needs constant supervision that I cannot possibly do 24/7 without moving from the bedside. The weeks spend in recovery because of this.

If we do not or cannot provide this care, residential placements are about £40,000+ per month. Yes. Per month. It is eye watering in cost. That won't change anytime soon because social care is beyond shot to bits.

My children deserve the best life possible. And a dignified society should surely want to ensure this happens? Children who are not disabled and their parents have options. They have chances and doorways. Mine will never work. Never have a marriage or children, they won't even be able to cook a basic meal.

There is no overtime or upskilling for me. No situation where they fly the nest and I can focus on my career again. Unless they become some dangerous through no fault of their own that a 40k plus a month placement goes ahead as the alternative means I could die or be seriously injured, and that would mean they'd be at risk if I am literally unconscious on the floor.

They still deserve dignity and compassion. The chance of a good life. They are very happy currently. Good routines that are followed to a T. Safe at home because I have the resources to do it.

Care placement does not save money. Unfortunately. It would cost over ten times what I get in benefits.

I have seen so many mentions of people saying those on benefits should have no savings at all. Nothing. Really? You think my life isn't hard enough? You think I shouldn't be allowed a small nest of savings too?

When I finally drop down from caring, I will have next to no pension. After spending a lifetime ensuring the state doesn't have to take full responsibility for 2 adult men that will mean at least 4 paid members of staff are present at all times.

I am not just talking about MN. It is everywhere. Even 'funny' reels on Instagram targeted about how the disabled get this and that. How they should all drive a basic tiny car that has something written in bold to make sure everyone knows its a free car, as if they're really disabled, they'll use. That'll stop the chancers eh!

This is NOT about criticism towards PIP and DLA for things people deem questionable... even though they almost certainly dont have all the facts. This is about the blatant and not hidden disgust and begrudge of help to those with lifelong and profound disability

PEOPLE keep saying in black and white, no room for confusion in their words, that the disabled get too much. That it isn't fair.

I suppose this thread will get deleted. But a lot of views seem to be going unchallenged about the disabled that wouldn't be allowed if it was about something else that's suppose to be a protected characteristic. Seems to have quite a few comparisons with a certain country in Europe 80 or so years ago. When the hatred and deceit was being thrown around and brain washing people before not many years later, the public became okay with euthanasia of them.

Hell, I am sure we are already there for some. As I have seen with my own eyes, people commenting on MN and the likes of social media where their bloody name and pictures of themselves and their work can be traced, that euthanasia could be an option, ideally.

I suspect that figure is very outdated now. The numbers of people diagnosed with autism has shot up as the diagnostic criteria has widened. Everyone in my extended family who is autistic are in work but none of them would have been diagnosed twenty years ago. (None claim DLA)

At least she is spending the money on the children
They don't hand out diagnosis like sweets ,there is a strict criteria
ADHD is a disability and she is entitled to that money for them
Weather that is right or wrong ,is not the issue,the point is she is entitled,her DC has a disability and life will be more difficult for them with that disability.
In her shoes would you not claim the same money if it was available to your family?????

Yeah nobody is getting DLA for climbing trees or not wanting to sit down for dinner🙄🙄

A good proportion of people on disability benefits wouldn't need them if we had good and robust mental health services. Apart from antidepressants, the wait for therapies can be years, meaning people get more ill. Early help to get people back on their feet would be much better financially and more short term.

Speedy diagnoses of neurodivergences and good support afterwards would also save money. ADHD meds can be life changing for some, and haver been for me.

I would qualify for PIP but can't get my head around the process of applying due to the complexity. It would absolutely help me day to day in the things I struggle with, but people only see the confident and capable person that is my public face.

I'm not a high earner, but an happy that the tax I pay goes towards people who need it.

40% sen is not the same as disabled.it literally just means gets a bit of extra help on the classroom. It can be a temporary thing. Its just an educational term. In Scotland it also covers looked after children and young carers. Its not starting school disabled.

I don't know how I feel about it all. I have two severely disabled children - one very much like you describe yours and very extreme behaviour even for his special school (who are struggling) and one who was also like that but is now able to talk a little bit and use the toilet.

I don't think these benefits conversations are aimed at us BUT I worry an awful lot about how things are going to be for the people who are not quite so clearly and obviously disabled. My speaking son has only ever gone to special schools, his speech is all garbled and very delayed, he uses the toilet but might smear on himself/the toilet. He still runs at cars. He self injures very frequently. He has completely bizarre OCD rituals which ruin his life. He is often my most 'difficult' child. He strips in public because his level of social understanding is very low. I do worry people will look at him and because he's not as 'profoundly' disabled as his brother think he doesn't need the benefits etc.

HOWEVER, I never, ever used to say this but having moved in these SEN parenting circles and working in the same sector for some time, there actually are some people I personally believe should not be entitled to the level of state support that they currently receive. It's a tiny minority but I really think it is there. It's so difficult because I'm all for not pulling up the ladder behind us and also recognising the struggles of so called 'higher functioning' people (and there definitely, definitely are struggles) but it is not unheard of for people to receive high rate care DLA etc and not be severely disabled. I've seen it happen, with people I know really quite well.

I'll never forgot how I felt when a friend told me her daughter (same age as my kids) had been privately diagnosed with autism and ADHD and then used that diagnosis report to claim DLA and she got HRC on first attempt. I know I shouldn't be annoyed, it doesn't affect me, but when I looked over at my screeching, non verbal, smearing child in nappies, and then to her daughter who talks fluently, has friends, was able to attend normal clubs, used the toilet since she was 2 etc, well, something just changed a bit in me that day. I feel awful and selfish and mean but I never felt the same way about the situation again.

There are millions of undiagnosed adults out there in the world, working. Because we didn’t used to diagnose as many people. So those statistics don’t show the true state of working people with autism. Too many are undiagnosed.

Children coming up today are being diagnosed, or have suspected conditions whilst waiting for a diagnosis, far more than the current working age population was diagnosed. It was hardly even noticed in schools 30/40/50 years ago.

Working age people with diagnosis have, historically, been very severe cases. Which is why so many can’t work.

Now, kids are put through diagnosis a lot more. We have a lot more cases than ever before but, just like the millions of currently undiagnosed adults who are working, those kids will be working. They’ll just get reasonable adjustments to help prevent time off due to stress and burn out.

vast majority will add value items it’s almost as if to say ‘I’ll help but know your place and have the bare minimum’

No. People buy value items because its better value for money. They know there are a lot of people who need feeding, and they want the pound value they can afford to give to stretch as far as possible. A £1.20 jar of jam goes to one family, 2 x 60p value jars mean twice as many poor kids can have a spoonful to brighten up their porridge.

Autism is a spectrum..let's not start fighting among ourselves
Because that's what people want , devide and conquer
If she has a diagnosis,she has a diagnosis.

There’s a lack of personal responsibility and a feeling that people are owed something for nothing. Not aimed at the op, just generally.

See also "assisted dying", aka euthanasia rebranded as respecting autonomy. In reality, safeguards will quickly be watered down and elderly / sick / vulnerable people killed off. It terrifies me

There are also girls and women with the exact same thing. Why have you weighted your post by saying men? To try and conjure up the image of dangerous men? So people will say it’s ok to kill them?

The OP already explained it wasn't apparent with child 1 when she was pregnant with number 2

Firstly you are a hero and deserve all the help you can get.However buoyed by DM and the Sun etc .people all seem to feel entitled now somehow,Its not just DB benefits ,but people begrudging the pension costs .HA homes and basically anything they have "worked for"being given free to someone else! I had a great uncle who was severely disabled .Back in the 50s His Mum who was widowed. had to ask a friendly chap, if he could take him to the loo on a rare day out .People would stare and sometimes be outright rude .No respite/carers .Just a big grim institution with residents locked up for years .Do we really wish to return to such a depressing time?

My son has autism. We paid 2k for that diagnosis as NHS waiting lists are up to 4 years in my area. He's also in a special school. And will never live independently. Even though he's only 14 I am already getting the evidence ready to go down the financial deputyship route for him because he doesnt have a clue about money. However on the face of it he presents are quirky but also able. He's surprisingly affectionate when he wants to be and is absolutely passionate about his specialist subject.

Theres absolutely zero support available for able children with complex needs where I live. My local authority seems to have this view that they'll only provide support/services/educational placements that meet need if your child has a severe learning disability. Yes, I get some respite but thats only because 2 and a half years ago things were that bad he was taken into foster care. 3 hours away from where I live because thats the only carer who could meet his needs. He's back at home now. As for everyone else, the sum total of 'help and support' is to be parent blamed to the max and get shoved on repeated parenting courses. I've done 5 now and none of them have ever been in any way useful, helpful or even applicable to ND children.

And its absolutely relentless. Even though he's at school now (taken there in his own taxi because he is well known for attacking other people in vehicles) the caring doesnt stop. The washing machine is on with the latest round of bedding. I need to arrange a haircut for him at the disability trained and aware barber. I need to drop the latest pair of killed glasses into the opticians and make arrangements to see the only person he will talk to to pick them up again. I also need to go and get some more plasters to stop him chewing his finger again. He's already had 2 rounds of antibiotics for this and has pulled the fingernail off. And if that isnt enough I need to do battle with the community paediatrician service (who are breathtakingly horrendous) who are refusing to increase his melatonin because we haven't done one of their 'sleep courses' recently. I've already done this twice.

I would willingly give all the DLA/blue badge/all the other 'perks' up for one normal day when to all intents and purposes he's like a normal 14 year old doing 14 year old things and going to the local secondary school.

People are sick of the takers and players, not the disabled
There are only finite resources and they should be spent on those most in need, like your family

so many posters genuinely don’t think people play the benefit system, they definitely do

that is where my anger lies, because your children need and should have all the support in the world, instead we have a budget concentrating on people having more children they can’t support themselves

Actually many more than that could work and want to work. But cannot find employment. It's a well-documented issue.

If we want to get disabled people back to work, this would be the group to start with! They (we!) want to work!

Rocketed because the quest was to keep the headline unemployment figure down.

Its a bind for Govt's, tighten restrictions and unemployed numbers will go up, as people shift across, then the 'press/opposition say "What a terrible job you re doing etc" as is happening now.

However, even a so called mildly autistic child is very demanding on a parent, i think people without such children have no idea the stress it brings.

I'd like to know how those who want to crack down, will decide on who gets help and who doesn't?

Hard agree OP

The life of caring for significantly disabled children is hard and relentless and full of worries. The focus is on people staying within their families if at all possible so why not make life bearable for the carers involved.

Caring for non-disabled children is a slog for a few years but they usually develop independence gradually. Some disabled people are never able to live independently and that comes with additional worries.

Yes, this. This is the real problem. And this kind of claim is very, very prevalent. I know a girl in a very similar position irl doing the same. The family laugh at the amount of stuff the state dish out.

I have an autistic young adult ds myself so I know what it’s like to manage a lifetime of functioning autism. He’s a student and he has also worked. Me and DH carefully manage stuff for him to ensure he functions. He loves gaming. It would be easy for me to quit managing the situation and let him sit upstairs on games and benefits all the time.

You would be surprised what teachers see and yes there are people who will fill forms in to get the higher amounts, there is even one who offered her services on FB and Tik Tok. There are people who will abuse the systems and make it harder for genuine people such as the OP

I'm so sorry.
I don't begrudge you at all.
I hope life gets easier for you.
I cared for my mum after her stroke and she was getting a lot of support.
But she just wanted her independence back. She passed recently.
Bless you and your family.

When I was job hunting, I begged for help. I was sent on courses that were inaccessible and there was a refusal to provide basic adjustments. I remember asking why the person "helping" me hadn't informed the course leader that I need things in large print. She didn't think it was relevant apparently