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.

You really don't know what you'd do unless you were in that situation. And like lots have said, complex needs don't always become apparent for some time. They're often picked up at nursery or even school. It's unrealistic to tell people to wait years between kids in case the absolute worst happens and your child is whispers disabled.
Plus what if your second or subsequent child is disabled? Do you give the others back?

It's really good to think things through before you say them. Saves time and effort.

Yep, I can see which ones are offensive.

I think this is the problem - wage compression which means the level of benefits required to live have overtaken the income people make from work long hours in difficult jobs. Not even just entry level jobs. The real problem is the stagnation of wages. People want to feel there is a value in being healthy and working.

Please don't call your daughter high functioning. You're doing her such a disservice. Let her decide for herself in life how her disability impacts her. High functioning is not used any more now that we know more about autistic spectrum condition.

Same. I claim PIP for autism and mental health issues. I also use it to go to groups so I am not isolated and getting more depressed.
It is horrible what are saying about people who claim benefits for mental health issues. I wish I did not have them and I bet you wish you did not have psychosis.

High functioning means not Learning disabled. Stop trying to remove the language those with profound disabilities need to describe their disability.

My heart goes out to you, Op. You have it so tough.

That's a question for the government, not here. They have decided that the benefit you get is enough to cover the cost. It is not the person needing the cars fault that that is what is available. I think decsiin to lease newer cars is more complicated than what you think, and the decision is likely based on the car maintaining a good resale value after three years and having fewer mecanical issues and being cheaper to insure, as opposed to a ten year old car.

But it also ignores the difficulties that those of us with Autism without learning disabilities have

I consider myself high functioning. Is it not a term that is used anymore? Why?

You say any woman getting an abortion for this reason is disgusting.
I say any woman with that opinion is disgusting.

Women can get an abortion for any reason they choose if it means they cannot cope with that child, and the law in this country allows for that. To say anything else is disgusting and an attack on women’s rights, which are sorely needed. Abortion access is not a want, it is a need. For any reason.

I don't see MN as an anti abortion site, and I don't think that poster's post was offensive, it came across as opinions. Whether the woman in question was right or wrong in not wanting to raise a disabled child, is subjective, as it's a very personal thing, but that poster is entitled to be appalled by it.

There are rules about conduct on MN which apply regardless of the subject matter and people’s strength of feeling.(I have broken them too before but they still apply)

I’m not actually sure what that poster was advocating for as they said something about they wanted answers not including German style tactics(Obviously referring to euthanasia) and again later said something about not advocating killing so I’m not entirely sure what they were advocating(Possibly the removal of all benefits in some cases?) so I’m rather confused as to what they thought should be done but we’ll probably never know now.

Does it @Legobricksinatub ? (Genuine question). My DS8’s IQ is 160 last check. He can do GCSE maths questions, but leave him unsupervised in a room with other kids and someone (ie them) will get hurt. He’s at specialist school at an eye watering cost to the LA.

Does that sound high-functioning to you?

It’s now considered an offensive term because it is code for Asperger’s.
It has never meant not learning disabled. Even autistic children with passable academic achievement can be learning disabled- 1 in 3 autistic children are also learning disabled. Even if they get straight As in maths and science, they can still be learning disabled when it comes to English class- ie understanding poetry, or literary devices, being able to effectively communicate in written reports or oral presentations can affect all subjects too.

I genuinely can't believe I am reading this.

Ffs, the term used was ‘morally disgusting’
It is perfectly legitimate to criticise a moral code.
Thats not calling the person themselves disgusting.

that's not what they said. They asked why we should provide for disabled people. They asked what are the reasons we should choose the path of, in their words lavishing resources on them
they went on to say our reasons for supporting disabled people should not reference germany, or talk of a civilised society, or being kind
they then reiterated their question - what is the point of expending resources on disabled people.

Now that is not someone saying what are the solutions not including euthanasia.
that is someone saying why keep them alive and don't mention what happened in germany.

So sick of these weasel words.

Just read some of the fucking posts. "What's wrong with institutions"?

Fuck me.

"Also would it be better to have residential institutions where carers and these children could live with support."

How about we put all children in institutions with some carers.

How's this going?

I consider high functioning as someone who can function pretty normally in everyday life. I don’t actually link it to intelligence.
A very intelligent autistic person might not be able to function in society, but they may well be clever enough for MENSA.

Do you want that for your child?

It has always meant not low functioning which meant with learning disability. Learning disability means IQ less than two standard deviations below the norm - which no straight A maths and science student would be. You are minimising what it is to be learning disabled.

Lots of Aspies want to be called that, and lots are very happy to be called high functioning, despite a vociferous contingent trying to police their language. And yes, some like to be considered people first - with autism.

@Locutus2000 I wouldn't mind living in a bespoke housing community with other families in a similar predicament to mine. It can be very lonely and it is nice to be around people who understand. The housing could be appropriate to keep the children safe and there could be community spaces as you have currently in older people's social housing. The question is what 'rules' would be applied. I would still want to have the same rules as I had living anywhere else, and them being based on mutual respect, but I fear this would not be the case.