Feeling very unsupported within the welfare system as a neurodivergent family. No one will recognise that my autism and my husband's ADHD affect our ability to work. Self- employment is work we can do, but not the hours we’re expected so we can’t meet our minimum income floor, and are trying to survive on a monthly UC payment that is less than our rent! But because we fail the extremely narrow (mostly physical) limited capacity to work assessments if we weren’t self-employed we’d be expected to take any job - despite us both knowing that there are aspects of most jobs that we literally can’t do, or that would make us ill. The system is broken.
It's been a while since I've added another entry to my diary.
I'm too scared to check my bank balance these days. It takes real courage to face up to your finances when there's not enough to cover costs. It's easier to be ignorant in the hope it will all sort itself out on its own.
I've been unable to sleep ... I gave up trying to & have made a cuppa. The early morning stillness is just as restfully so I can think more clearly which has allowed me to reflect on the past few months. I've been so preoccupied during that time.
In July I eventually received the dreaded dwp envelope with instructions to complete another assessment form.
It's a much shorter form this time. Still I'm not attempting to fill it in myself no matter how knowledgeable I've become regarding these processes. Following a recommendation from my MP, I called the professionals in to help me with it. The appointment date to see someone was well after the return date for the form so I immediately needed to call up the dwp to request a return extension.
To begin with it was ridiculous that the form had a date which showed it took 2 weeks in the post to receive it which left me 2 weeks to return the darn thing ordinarily.
At least on this occasion I was ready to go to all out war with them if I wasn't given what I'm perfectly entitled to. Once the call handler told me I could have the usual 2 week extension I immediately informed her I couldn't even get an appointment to have help completing it until well after that date. She then told me she needed to speak to a manager & as quick as that she came back with a date to return the form some 6 weeks later.. Technically I've had about 2 months grace to complete & return it, which is incredibly long. Although I guess it's due to the fact that in some parts of the country the dwp have backlogs of work to process. In some regions people are waiting 12 to 18 months for their applications to even go through before further assessment.
This form, has meant I have had to dig long & deep into my mountains of medical records, past applications, new medical information about my health conditions, etc., in order to evidence proof & facts. Not simply a case of "innocent until proven guilty" more "guilty of fraud until proven otherwise".
Alongside all the effort to get my medical notes in order ready for scrutiny by the dwp - who are by no means medical experts, for if they had all the answers about my condition they'd be earning millions in medical research sharing their findings, not working as civil servants, (medical assessors earn £46,000 p/a alone, possibly before bonuses), we also had to hide from the bailiffs who turned up at my door for my middle son. So that wasn't very pleasant.
He uses the house as a care of address but hasn't made that clear to his creditors. So my youngest & I have been virtually like prisoners in our home until he eventually called up a debt helpline. (Only after nagging him to do so for months on end.)
After seeking advice on the issue myself, I only need to show any bailiffs a council tax bill - to prove he has never lived here - through a window rather than opening a door to them. I've found out bailiffs are supposed to exercise more understanding to vulnerable people. Nevertheless I still remain weary of unexpected visitors ready to point out the facts as they are.
Also I was in a dilemma with my car last month. It needed major repairs. It had to go. I had to look for another used car. Amazing that I found something suitable & managed to sell the old car too. This took a big chunk of my money to fund the change over. Still trying to recoup the costs. It will take a while for that to happen, obviously.
About the same time I also received a parking charge notice. Forgot to display my blue badge in a disabled parking bay. I was horrified. I immediately panicked & sent in my appeal to the agents ... which got knocked back. Next tried to call the landowners but no joy there either.
It was only in a casual chat with the MP's caseworker that they offered to chase it up for me & managed to get the charge dropped! I was over the moon. Could well do without paying £60 - £100 in fines! Told the case worker that's easily 2 weeks shopping!!
With all these things going on weighing heavy on my mind as well as family issues to help out with, it feels like there's hardly been any time to enjoy the school summer holidays.
We did manage a week away in a caravan. However I was wrapped up fighting the dvla to reclaim car tax exemption for the new used vehicle I recently purchased. Along with family demands we were expected to sort out even though we were on holiday, my son & I were left feeling harrassed & upset with everything that went on during the week.
So much so my son has recently suffered nightmares about another ongoing issue we face. We've been trying to find suitable alternative accommodation with social housing. Decent homes are few & far between.
This summer has felt like our worst year by far. As much as there is to be grateful for, there's equally as much I'd rather forget or not have to deal with.
I hope we can try to enjoy what time is still left before the return to school in a few weeks but given the friction between my immediate family, it's not likely to be easy going over a bank holiday weekend unless we hide or switch off the phone.
The month is celebrated when I have worked enough hours. Each month I am in a constant state of worry as to whether I’ve been given enough hours to not be answerable or at mercy to the DWP. Each month’s earnings fluctuate working on a zero hours contract. The government’s reasoning is that they are helping. This is not help, being answerable is punishment for earning a low wage, this is punishment for the lack of power and choice.
A lot of people are approaching me about the fact they have been catapulted onto Universal Credit. I have some experience of UC and work with a UC group. It seems the same problems that arise for me many years ago are still prevalent now. I am worried about the summer months and yet some of these people in my community aren’t getting any money for 5 weeks as there is a 5 week wait. It just shows that there are other people in much worse situations.
I recently received my PIP review form through the post, and all of the feelings of dread, fear and anxiety that I encountered when I first applied for it, came flooding back, because the process is often far too rigorous, and stressful for many disabled people because it is often followed by health assessments that don't often go in the applicants favour, that they end up having to go through a lengthy appeals process following them.
I'm sure that for the majority of people receiving PIP, their lives depend on it (as does mine) and the thought of possibly having their payments stopped or disrupted (even if it is temporary, due to the PIP review process) could cause a lot of people a great deal of anxiety and distress.
Furthermore, I can't quite understand why those of us with a lifelong inherited disability (for example, a disease such as Sickle-Cell/Trait) and receives PIP, has to have their application for it reviewed every 3 years, when it is clearly evident that their condition, is never going to change or improve, not only because it is genetic, but also because conditions such as these gets worse, and not better over time., and so therefore, I believe that their PIP payments should just continue throughout the duration of a person with these conditions lifetime. They shouldn't have to go through further stressful health assessments by the DWP in order to prove that they are still ill in order for their payments to continue - a Doctors note with evidence of the persons medication continuity should suffice in my opinion.
In sum, I think that alongside the Universal Credit system, the PIP application/review process and system also needs to change too.
The easy answer to that is, it's not really that easy nor straight forward to answer.
Assuming this "adequate monthly income", is current prices rather than pre cost of living because my electric bill cost £22 for 10 days as it is and that's with enforced rationing!
Furthermore, does this then run the risk of being deemed ineligible for further financial top ups with student loans, free school meals, free school bus pass, free dental, prescriptions, vouchers towards glasses, school trust funds, bursaries, council tax and housing benefit support and cost of living payments etc etc?
Ideally I'd like to have enough to pay for our own home, a reliable car, and be able to pay into a pension for when I am old and grey. Least a week's holiday away each year, would be good, plus eating out regularly and able to buy tickets for shows or concerts occasionally or a new wardrobe from time to time and salon appointments.
Obviously it would be helpful to have savings for a rainy day or to leave a lumpsum to my family (something very much frowned upon by the DWP for benefit claimants) when I pass away.
This is all a pipe dream of course.
Without context, and in addition to the financial support we also receive at this time £25,000 to £26,000 would seem reasonable to cover things as they are, without being too greedy.
But then as the saying goes, "Greed is a bottomless pit"....Erich Fromm
Had to attend a meeting at the job centre. I will now be expected to attend weekly appointments until my next set of wages are released, and then wait until my UC award has been calculated - A further 2 weeks after my wages are received.
The work coach was sympathetic to my situation as explained. She admitted the weekly appointments and the cap were punishing.
I have picked up more work hours. That’s another struggle.
There's lots of things I'd like to ask my MP given half a chance.
Primarily why is the benefit system so hard to understand or navigate and when will DWP employees learn to be more helpful and kinder and treat the customer as equals?
MP's don't see or hear about half the things people are going through. I'm talking about good hearted law abiding decent hard working people doing their best, but who are often held back due to financial physical, psychological and emotional circumstances far beyond their control.
Take the benefits systems for instance. Why are they so difficult to deal with for the customer? That's even before conditionality or sanctions come into effect.
DWP staff go on courses to learn how to implement and administer these systems.
The average individual who claims them doesn't receive any of this training to understand the decision making process.
I myself, like many other service users, haven't a degree, yet you need one in order to understand what our rights to it are, or what we are deserving of or how to apply for it.
"Consumers" have got none of that training or support. That's why so many people give up at the first hurdle.
Not everyone knows to ask for help from outside agencies or organisations etc. Even when they do, help is limited slow and appointments are few and far between.
Furthermore, it's widely known health assessments are more legal tests than health assessments. I don't have a law degree. It was lucky I met someone who did have one and was willing to help me understand these processes and get me through them. How is that fair to people who don't have that access?
I have had to seek out a whole variety of support for navigating my own claims. More recently, this even involved signing up and paying for online training in how to advocate for myself when making a claim. We looked at case studies, were given statistics, completed tasks and discussed scenarios printed in two workbooks.
I'm a reasonably intelligent adult, I still don't really understand any of it.
All parents want is a steady income that meets the needs of modern family life and provides them some dignity. When will that happen?
I found for me they just resend forms and ask me to start from the very beginning! I'm referring especially in terms of disability benefit.
Specifically with the DWP, I personally dread the process of a change in circumstances no matter whether positive or otherwise. It's always a time of uncertainty, worrying how it will impact our finances. Also there's always the possibility any changes in my health will trigger another assessment which would be a real inconvenience to us. I worry it would be like starting all over again from scratch or it could take months to complete as I believe they are so far behind with claims.
Likewise the local authority has to be notified of changes in status or circumstances. I particularly feel the phrasing they both use to get their message across implies threat or significant consequences for not doing so urgently. i.e. "You must tell us immediately"....
Last year we moved house so I anticipated a bumpy ride in respect of my details needing to be verified or changes in payments. It's like throwing stone on a pond some create ripples some can turn to waves or some even turn into a tsunami depending on how dramatic the changes are.
I do remember feeling as though the DWP didn't believe me when they needed to ask for further documents to prove I was living here. How a tenancy agreement wasn't good enough proof, I just can't imagine, but they wanted more information and when you've only just moved house you're not necessarily going to have that to hand. It took time to change utility bills or update my bank account with the new address which especially in the days of paperless bills can take time to process. I mean it was enough of a mess switching energy companies, in order to have gas and electric supplies set up with my preferred supplier. Then internet and water utilities, never mind satisfying the DWP further than I had already tried to.
Not as though we can predict our futures, however, I personally prefer to avoid changes in circumstances at all costs.
My ex partner left me in October 2019. I had to go to the job centre to make a claim for Universal Credit has my wage wasn't enough to pay the mortgage, bills and my 2 children. I made the claim in October and did not receive any money until the January 2020. This meant I had to use foodbanks and that Christmas was the hardest ever. Luckily I managed to still get Christmas pressies has I went to charity shops and a friend helped me out. I was made to feel I was begging for money when I was working full time. Since then I actually got a second job and earn my own money so I don't have to claim anything. If it wasn't for food banks we would have gone hungry over those few months. Before I would have just thought, get myself a job or go back to UNI. I was already doing those things so I felt helpless and worthless even tho I was working. I was also recovering from cancer and remember thinking I don't have time to be ill and just carried on. The positive was I gained strength from a place I didn't know I had until then. This will carry me through anything now.
Having to change circumstances is a scary process, you never know if they're gonna stop your benefits or not, especially PIP, I've heard loads of stories of people being forced to reapply when they report a change in circumstances.
I've got an upcoming change in circumstances at the end of the month, it'll mean changing address, probably twice cos I'll be homeless for a while, I hope not long, and a reduction in my benefits of nearly £500. I'm lucky to have support from a local charity who's going to handle those phone calls for me and help me set up bills because I'm gonna be emotionally strained at the time, my mental health won't handle being homeless very well (triggers flashbacks of being homeless as a teen and sharing rooms in hostels with people taking drugs, drinking alcohol and violent - not to misunderstand I meant some amazing people when I was homeless and most turned to drugs or alcohol to cope with being homeless, most also protected me in my youth from copying them and I was only homeless for a few months but it was still very scary experience to have). I have to go through that again as an adult through no fault of my own but cos I was put in temporary accommodation which isn't a real contract but a licence meaning they only have to give 24 hour notice but gave a months, I'm bidding on homes but there's been nothing to bid on since early May, it's scary. Anyway, so I know I'll be at risk of mental health decline, I have a housing officer at local council who's trying to help me find a home there, I've local charity supporting and trying to push getting me a place, but can't give what's not there to give. So right now I feel homelessness, I fear loosing my benefits and I fear the uncertainty I face. Benefits are seldom straightforward and they often look for excuses to screw us over and we can't trust benefits services to be there when we absolutely need them, that's when they're most likely to screw us.