Our Daughter (31) was born with Arthrogryposis multiplex congenita, (AMC) affecting all four limbs
For all of her life we have been 24/7/365 unpaid carers on income support and carers allowance, i do driving and lifting ect as i can taking Emma where she needs to go shopping appointments back and forward to our home or just being there for her ,my wife does the girly stuff not appropriate for me to do, it is a joint effort
5 years ago Emma gave birth to our granddaughter and her and her partner lived with us ,But just before lockdown she moved with her partner to her new home 30 miles away i knew this was a mistake but she so desperately wanted her independence and to feel normal but now she realises that was a mistake and is trying to move closer but that could be years
At that time, we gave up carers allowance as we were no longer met the 35-hour threshold but were doing about 20+hours
however, because we were still providing ongoing and substantial care, Income support allowed us to stay on that benefit and issued a letter to that effect
we tried to manage, but as we lost housing benefit + carers allowance we were struggling and was advised we should claim UC
I did talk to the UC people and explained about our ongoing commitments and showed them the letter from Income support and explained, that we had not claimed it previously, as we were worried about how the work commitments and the ongoing care would affect our ability to provide the care/supervision we were still doing, with the added threat of sanctions hanging over our heads if we failed to comply.
we were assured given our situation that it would be taken in to account and or commitments would take account of this. And we were likely to be put on the limited availability for work list.so, we were forced by circumstance to come off income support and claim UC.
During the height of the pandemic, we were contacted about once a month to see how we were getting on and it seemed they were keeping to their word although we were not on the limited capability for work section.
we where married when she was 19 she is now 53 but has no skills or training other than being a mother, housewife and unpaid carer and suffers from a skin condition that means she has to apply steroids to her hands, she also has feet issues
They what her to look for part time cleaning jobs of 5 hours a week minimum wage or more with in 45 mins travelling distance and have said if her hands are a issue she can wear gloves likely supplied by a perspective employer
if indeed she could find a part time job that fits around or caring responsibility’s at minimum wage £8.91 she would be earning £44.55 and although our NI is being paid with the carers credit we still receive, and unlikely to reach the tax threshold our Uc would be reduced by 63p for every pound meaning she would only be getting (in real terms ) £15 and that’s not taking in to account the added undefined travel costs.
it was my understanding that slavery was abolished in the Uk in 1833 but this situation if she could find such a Job basically amounts to slavery to satisfy UC .
i myself am not free from issues, at 59 years old i have arthritis in both hips and may need hip replacements in the future, and can only walk about 150m without increasing pain and have weak muscles in my arms due to statins and am on tablets because of high blood pressure cause by stress i was on these medications to lower my cholesterol and to help my high BP.
For over 30 years we have been unpaid care providers like many others in our situation saving the public purse untold millions, but now for the sake of 15 hours less in our caring we are under increasing stress and worry over the fear of sanctions because we can’t find work that fits around our ongoing and substantial care we still provide.
The hours we do with Emma often go up to 30 and sure we could lie and say 35 hours but sometimes its less and i do not feel comfortable lying, but even if it was 35 hours and we claimed CA the result is Emma would have money deducted from her PIP and would mean she would be in a worse of position financially and i can’t do that to my daughter who has more than enough challenges in life as it is
My wife is often in tears because of the worry and stress we are under and the compounded need to satisfy these admittedly light commitments i don’t fair much better and am constantly sleepless from the pain i am in and i am writing this at 5:30 in the morning because the stress and worry just keeps running in my head over the fear of sanctions meeting these commitments and having our Uc sanctioned
keeps me awake
why we have to be contacted twice a month and explain our self’s and what we are doing to find work is demeaning ,my daughter is not going to get better and we will be providing care and support as long as we live.we have to be available to go through at a moments notice in case she falls or needs some other help
I have tried my best to explain the circumstances we are facing and the fear and worry’s we have but i am dyslexic and have trouble putting word to “paper” (so please excuse spelling and grammar errors) looking after a disabled person is a stressful thing to do, but we coped but this added work commitment for so little hours just add to that and leaves little time to relax and charge our batterys and as a result out health is suffering my Bp is high and i am suffering knight sweats with the pain i am in, i cant sleep
I don’t think the work coach really cares about our situation and feel he is just looking for a reason to sanction us or maybe thats just me worrying to much as i tend to do
during the pandemic we heard from him once a month “just to check in and see how we are doing” he said but now its once every two weeks and we are feeling badgered
we are at out wits end with the combined worry about our daughter and the threat of sanctions,now added to that we will loose the £20 UC uplift to UC because of the pandemic that amounts to £86 that will make a already financially strained situation even worse
i don’t know where to turn or what to do