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.

I had been with DH since university and we got married when I was 22. Had DD at 23 which wasn't planned but was fine, then went for baby #2 a year later to get them 'out of the way'. As the saying goes, we plan and God laughs!

Op. I just need to state to all bitchy nasty judgemental responses to this thread, that you have NOTHING to explain, justify or discuss unless you're totally comfortable. Their opinions are uninformed and ignorant.

You get the money you and the DC are ENTITLED TO. Because of their differences. Because of their needs. Because we are a supposedly developed society. Because they are human beings and they deserve it.

You sacrificing the chance for a "usual" life to care for them will have saved the taxpayer (the shitty posters on here) many many thousands of pounds. This is an easily checked FACT, for all the haters and doubters and right wing miseries who have been blinded by privilege and jealousy.

People are so quick to judge, they haven't got a fucking clue. They don't know what's best. They don't have the intelligence to realise that disability can strike anyone, them included, their children, at any time. And if it happened, they'd instantly claim everything they are ENTITLED TO (rightly so) and change their awful tune pretty rapid.

You are a wonderful, loving parent. Your sacrifices and selfless years of hard effort to keep you all afloat speak so highly of you as a person. Your exh is a piece of shit.

Do you get any time off? Is there anyone who can step in?

Judgement from others, knowing that you are stuck in a cycle, losing self esteem,/confidence/social network from not working. As tax rules change and new legislation comes into effect I realize that I don't automatically know these things so feel very out of the loop.

What s the plan for when you longer around?
What s your plan if they go into supported living and you lose their pip and uc?

💐
Is there any kind of support group, or opportunity for you to socialise, even for a coffee morning?

I'm afraid that in my experience, loads of people choose to become parents without considering the "what if". Nobody ever thinks it will be their child who has a disability or serious health condition.

My time off is when I'm working so I really look forward to that. My parents were both working full time when the DC were young so weren't able to give practical support. They have also had to be unpaid carers for relatives of theirs too on top of their jobs so I would never have expected any help. I had to home educate dt2 for a number of years on and off and then dt1 never returned to school full time after lockdown, so it was 24/7 for so long. I did have a few hours a week respite at one stage but that funding went.

The security sounds nice but I honestly wouldn't trade places with you.

Are you getting any respite at all?

As of yet no plan, this is terrifying but I need to think ahead. I really don't want them to have to go into residential care while I'm alive. They both have different types of needs so even getting them in somewhere together would be very difficult. I do not want dd1 to have to do any caring so need to set the ball rolling.

Do you feel that the benefits system needs reforming?

If so, do you think it should be more generous or more vigilant that there are people who shouldn't be on benefits?

The very thought of them losing their PIP and/or UC is terrifying. I can understand why some mothers have taken their own lives and that of their disabled DC when this has happened. I'm extremely fortunate that I know my parents could help me if I needed it. Dt1 went quite effortlessly from DLA to PIP for an indefinite period. DT2 only got awarded for 5 years so that is a worry. When you move from paediatric to adult care you often lose a lot of input so it's much harder to prove your case.

I have volunteered in different sectors/charities over the years and there are people taking the absolute mic because they don't want to work. These are usually ones who come from families of generational unemployment and know the system inside out. Things need to be made easier for those with DC with disabilities to help them stay in work. Childcare for children with complex medical needs is only for the mega rich as you need to pay specialist nursing fees. Before my drs turned 19 (and we're in theory in FT education) I had a work allowance of £400ish a month. As soon as they turned 19 I lost that, so I'm worse off, but their needs have not changed do I'm worse off.

It sounds like a real battle. You're still quite young, which is good, but it must be taking it's toll.
I'm guessing that your oldest child is living independently?

There are too many on benefits by default, more needs to be done e go improve educational outcomes in the most deprived areas. The Swedish model appears to have done this well and they have one of the most generous benefit systems, but it is a safety net rather than an option if you don't want to work.

DD is at university and is doing really well. Still lives at home but when she graduates will be moving away I assume.

Security? What an odd comment.

Triggered much.

Have you even read her posts 😂

The security has been a lifesaver. My main issue now is that I'm a private renter which has become extremely precarious. We were in a perfect for us house for 10 years and then the landlord sold and we've had to move several times in five years. I'm now on the housing list and in temporary accommodation in a house with no downstairs toilet which is a bit of a nightmare. My main worry is about housing, I will feel a lot better if/when we get a council/SH property. The list is mad though, we haven't moved position in two years.

What a disgusting comment.

Who is judging you? And, if they are, what, exactly, do they suggest you could have done, or even do now, differently?
This has happened, what are you supposed to do? Live on fresh air? Feed your children nothing? Abandon them somewhere?
It’s a shame your husband turned out to be such a dud, but I don’t think you could have foreseen that and you certainly can’t force him to be a decent person (he can get to fuck with his “empowerment”).
I hope he contributes financially. But, your situation is exactly what the benefits system is for. Shit that you don’t have secure housing and I hope you can get that sorted soon.

Do you think it’s fair that those on benefits are not in debt, but the tax payers paying the benefits often are?

Re the security comment. When I was on legacy benefits I did feel a sense of security. I rarely got contacted, just had to do a carers assessment every two years. With UC it's a lot less secure. When I moved from tax credits to UC I was hit with an overpayment for £2300 through no fault of my own and this was deducted from my UC. If you miss any notification on your journal (and I'm responsible for 3 journals) your UC can be suspended. The last 2 months I've had more money deducted than I should have and I've had to chase that up. You need to be savvy and literate to understand the messages and updates they send.