I'm a long term benefits user: AMA

[mycheeseplantiscalledcharles]

I won't bore you with the long back story but to sum it up I had a professional career then two of my DC were disabled, needing FT care. They are now 19 and I've been on income support and now UC for 18 years. I have always felt comfortable financially and never had any debt. AMA.

Bloody hell loyal give it a rest. Stop making this about you and your bloody roof! If you need a rant, start your own thread. Op, I’m in a similar situation to you (but still not a patch on what you’re dealing with) and I just wanted to your boys, and your dd are very lucky to have you. You deserve every bloody penny of it.

she (as a FSM pupil) was told to stand in a separate line in the canteen

I thought this practice had been stopped because it's humiliating for the children and doesn't respect their privacy.

I think the Op is the appointee for her childrens benefits so she gets to decide how the money is used due to her sons complex needs .

I appreciate that. I have a family member who lives in residential care and know how expensive it is.

But, I think as a society we should be aiming for a higher number number of carers working and the care being provided by the state. I think it would reduce benefit fraud.

There should be better support for parents of disabled children so they can go and work.

I also am a parent of a child with additional needs. I do work FT but it is a struggle and many wouldn't in my position.

I have already said I mistakenly didn't realise her daughter wasn't one of the twins as she didn't mention her daughter in her OP or the gender of the twins.

Benefit fraud has very little to do with parents caring for their own disabled children. If every disabled child was put into residential care the country would be (further) on its knees. It is extremely expensive and families who do want to put their dc into residential often face a battle. There are adult dc with very complex needs and the government will not approve appropriate places. Harvey Price is a prime example. The government saying they will approve place A. Place A say they can not meet his needs and will not take him. Place B say they can meet his needs but it is significantly more expensive, government say no, recommend place A and the cycle continues.

At present, no. Their quality of life would drastically decline in residential care because I'm currently fit and able to look after them, take them on days out, take them to all their appointments and do their therapies. I'm not a proud martyr, if I feel I cannot do this then I will definitely put plans into place. I'm not using my caring status as a means to get out of work.

@LoyalMember I'm sorry to hear of your struggles. If it makes you feel any better, about six months ago there was a storm and it knocked the slates around the chimney out of position. When we have heavy rain the water comes down the walls and I have to put towels down to absorb it. The LL knows about it but has yet to do anything. I would much rather be a home owner with this problem than a renter.

It’s actually amazing to me how people who can’t read look down on others.

READ THE THREAD

Theres additional needs and additional needs
For some people with disabled children / young adults its impossible to work.

I think one of the problems about the terms 'disabled' and 'SEN' now is that they are so broad, so you could have two parents with a "disabled" child each and they have completely different levels of needs, so the experience of both is completely different. I've read many a thread where a poster says they are severely disabled and have disabled DC, yet they work full time and "just get on with it". In my world, for the vast majority of people with severe disabilities, work is not even in the equation.

Yep i agree
Some people just dont get it
My 16 year old has the abillity of a toddler
He needs 1:1 care at all times.

The current legal definition of SEN is actually very close to the definition used in 1978 (see the Warnock report). It hasn’t broadened significantly, neither has the rate of SEN increased significantly when you look at the actual statistics rather than the media rhetoric.

I mean the common usage of the words. Both now are interchangeably used and can mean such a broad spectrum. But "disabled" in particular.

The terms actually have a legal definition, though. And, for SEN, that definition hasn’t actually broadened significantly, which is what I was pointing out.

I second this. When I say my adult child is disabled, people expect a walking, talking disabled person. They look horrified when they see a young woman in a large, specialist wheelchair, unable to converse and flanked by two carers. Can see the blood drain out of their faces.

The word ‘disabled’ has become almost meaningless.

The care provided by the nhs for my adult child costs £15k a month covering the hours 9am-5pm. I do the night shift, 5pm-9am despite 1:1 being unsafe.

If I worked I’d need the night shift covering so I could sleep longer than 4 hours. So you’d be looking at almost £50k a month.

I don’t think people understand how disabled some people are or how much care costs. It’s definitely cheaper to pay carers UC. If they were paying me properly I’d be rich.

I'm not talking about legal definitions, I'm talking about the terms within the context of carers not being able to work and on benefits. Posters have said they think it's justified that I'm getting benefits but not everybody with a disabled child.

You might not be meaning the legal definition, but I was pointing out the terms are legally defined. So when you or someone else uses the term SEN, that has a legal definition. It isn’t a term someone can just make up their own definition for or broaden.

People very much do make up their own terms though, even on threads posters will say my child has SEN but then go on to say there is nothing formally identified, but "they are just a bit slow". I've even heard many people also saying their DC are autistic but then say they have no diagnosis.

I am with you on hating self identification.

However, a CYP doesn’t need something to be formally identified or have a diagnosis to meet the definition of having SEN (or being disabled).

Because she’s disabled. Disability benefits don’t assess the ability to work - your’e confusing them with out of work sickness benefits. Disability benefits like PIP and DLA are there as a contribution to the extra costs of living with a disability, allowing the disabled person to take part in society on a level playing field with those without the disability. What part of this don’t you agree with ?

I disagree, sorry. This may be outing but I have a severely disabled sibling. They live in residential care and require 1-1 care 24/7 and at certain times 2-1 care. It is not possible for your twin sons to be as disabled as my sibling as you are not two (or four) people and you seem to be caring for them on your own.

My mum still worked (as a teacher actually) full time when we grew up. But the benefits system in the 80s wasn't anywhere near as generous as it is now.

I also understand how difficult it is to place people with complex needs, believe me, no one wants my sibling. But as they have to live somewhere, so somewhere is eventually found.

I don't know anything about Harvey Price but he can't be homeless so a placement would be found, it might just not be what Katie Price likes. I would also near in mind that Katie Price is a narcissistic attention seeker.

To clarify, my DD isn't disabled, that poster got mixed up. It's my twin sons who are. Regardless, it's perfectly possible to be disabled and go to uni and....shock horror.....get PIP too!