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.

What's your point? That I'm using my boys in order not to teach full time? Working would be soooo much easier. And FWIW, my ds1 would definitely require 2-1 care in residential. He gets 2 carers at home. I'm in work now, putting my feet up and browsing MN, it's lovely to have a break....thank goodness the benefits are so generous!

My entitlement per month:

If I don't work:

UC standard rate £400
Carers element. £200
Carers allowance £360
= £960-£360 =£660

UC pay £900ish of my rent, I pay £650 from PIP.

If I work (I aim to do 4 x 12 hour shifts pcm but not always possible if I can't get carers) every £1 I earn, £0.55 is deducted.

Op, you come across as very intelligent and level headed. Hats off to you and please stop shaming yourself re benifits.

Can I ask what you do all day with the boys? What does their care entail? Do you a break?

It's very difficult to understand your situation as you've given no information on what twin 1s diagnosis is / needs are. That's your perogative but on one hand you've made it sound like you're caring for them single handedly plus the other disabled twin and then you say actually you've got carers coming in and then it's 2-1. Which one is it. How many hours of care do they get?

My advice to you is try and see the two as having seperate trajectories. Twin2 has less severe disabilities, he may be able to do voluntary or paid work / go to college / make his own friends / relationships and life. That is very possible with a LD and ASD, please look at opportunities that are best for him on his own.

I also believe twin 1 would have better opportunities residentially where he would have opportunities that would be suitable for his needs. Yes day centres have cut their hours but people with LD can lead good lives.

Op you are only in your late 40s, you need to build a life outside your adult children. You've sacrificed a great deal for your children, which is laudible, but that doesn't have to be your identity forever.

Sorry but this made me laugh. You don't know anything but you think one is better off in residential and the other could be working? Thankfully DWP are more clued in. And if you read my posts you'll have known that carers (in theory) come in x3 for 15 minutes. If you can think of any work I can do within that time then please let me know!

I set my alarm for 5.30, turn ds1 over and then make myself a coffee and get into bed and go on my phone or read for half an hour, that is my me time. I try to prepare dinner and/or clean up (I'm often too tired at night) kitchen/put wash on before dt1 wakes. Carers come in at 7.30, in theory to get dt1 out of bed but often he's already out. Our bathroom is not suitable to bath/shower him so it's mostly a bed wash. DT2 sleeps in later as he has disturbed sleep during the night.
Both need help with getting washed/dressed and i have to feed dt1. The past two days we have had hospital appointments so we go out in the car, I ask DH to come with us to stay with either boy in waiting area, so if he agrees to come I pick him up on the way. If we are out anyway I'll take them to a park for a walk, or even just sit on a bench and people watch. Dt1 loves libraries so we spend a lot of time in different ones around the city. DT2 loves our local museum so we also spend a lot of time there. It has an art floor so he can do some activities. Everyone knows us and gives them plenty of time which is great. The disabled changing facilities are brilliant here so it's a great all rounder.
Carers come at lunch time but I often cancel that as we are often out at appointments/park/museum. If I know we'll be out I'll make us a packed lunch to eat outside. Come home, both have therapies such as physio and OT (they were getting this daily in school and have really declined so I need to be on the ball). I also do some revision worksheets with DT2 as even his basic addition has deteriorated. DT2 is not keen so Horrid Henry is used as an incentive. It's his favourite. Dt1 listens to audio books or watches films. He doesn't have adequate gross/fine motor skills to look at book independently. They both have private OT and physio sessions bi monthly, they come to the house for this. They also both 'swim' once per week each, with a 1-2-1 instructor. I can't manage both at the same time so one watches while one is in the pool.
We have dinner together at 5ish, DD is usually home to eat sith us
DT2 has really struggled with DD being at university (as opposed to school) and she finishes at different times daily, but we try to eat as a family 3 times per week. I prepare dt2s food (cutting, arranging plate) and he can use a spoon independently, but feed dt1 and then I eat. His food intake has really reduced in the last few years and we are considering a PEG tube.
After dinner DT2 plays with some toys whilst I try to clear up kitchen a bit. Dt1 might do exercises with slime or playdoh.
We go into living room together and talk together, they both will still be playing whilst we talk. I still read to them and it's a big part of our evening routine. Routine is extremely important to DT2 and he gets very overwhelmed with change/interruption now.
Carers come in at 8.30 to change dt1 and put him into bed. I help DT2 with personal care, pyjamas and getting into bed. There's quite a medicine regimen before bed too which feels like it takes ages. They both either watch/listen to something on the iPad. They both need medication to help them fall and stay asleep. I get into bed at 10ish and fall asleep very quickly, dt1 needs turned every 2 hours so I have an alarm set. It's a PITA but an airflow bed could not fit upstairs in this house.
That's a rough idea of our routine, obviously I have left a lot out as I'd be here all day typing stuff out, but just wanted to give a snapshot of our main routine

I think the Op would know the abilities of her boys better than you
If anything i find parents of severly disabled children/ young adults play down the disabillities because for them its just how it is.

Some people on this thread seem unwilling to acknowledge that even if a disabled person can work, it's not as simple as just 'getting' a job. Unless they are fortunate enough to be able to get in somewhere on the 'nod', so to speak, a disabled person who has capacity for work also faces the challenge of beating out all other applicants and putting themselves at the top of an employer's selection list. We still live in an ableist world and sadly it isn't that simple, not by a long chalk.

OP I really dont understand how you havent been allocated an adapted house by the council yet. You qualified for one and give your current home doenst have adequate washing facilities for your son you should be at the top of the list. Do you have any input from the disability team? Or OT? . They can help you get rehoused in appropriate accommodation

It can take years to get allocated. We have been assessed by an OT team so all of the maximum help is there. We are flagged for ground floor accommodation, so either a bungalow or a new build 'home for life'. The waiting times can be 10 years, I am in a high demand low turnover area, but need to be here for the hospitals.

How do they prioritise people for housing in your area? In mine you would be put to the top of the list (quite rightly so)

We are a priority but the housing stock just isn't there. We either need a new home built or for someone in their current home to die and free up a property. Both options are a waiting game and we certainly aren't the only ones in such circumstances.

Thats difficult but please keep checking with the council as that can make a difference.

So sounds like DH crashed and burned - going from doctorate to studio for people with mental health difficulties. Can quite understand why you don’t want to be his carer but see no advantage in divorce.

You have coped admirably well in circumstances not of your choosing. Most people who work can’t understand that working in comparison to caring is a respite break. Because they don’t understand caring. That’s ok but they don’t get to judge carers.

And can’t understand the wish of parents to enable the best life possible for their disabled DC for as long as possible. Who wants their loved ones to go into institutional care unless they are desperate?