** The rules referred to in this post have changed yet again. Read our new post here to find out how. However, the information below about our own battle to get UC remain the same**
It’s never easy to fund yourself through university unless your parents have very deep pockets. Students usually have to have a part-time job to get by. But for disabled students that’s often not feasible.
However, if they’ve been very persistent, and have Personal Independence Payment, disabled students have been able to claim universal credit and, sometimes, housing benefit from the Department for Work and Pensions (DWP)
But last month, in the wake of a legal case, DWP has issued new regulations it claims are to “restore the policy intent” that means a disabled student "must already have been determined to have Limited Capability for Work on or before the day they claim Universal Credit (UC)". What? How?
The rules have always said you can't claim UC while you’re in full-time education, unless you are disabled. But that’s not enough for the DWP. These regulations mean they’ve land-mined the jungle of benefits-claiming.
So a disabled student who doesn’t find out about this entitlement to universal credit BEFORE they begin studying, is then forced on a wildly circuitous route to succeed in a claim. It also means that if someone becomes ill or disabled while they are a student, leaving them with limited capability to work, they can't then claim UC.
Note: a legal update to this story on 10 November 2020: DWP operated unlawful policy for years of refusing Universal Credit for disabled students with advice for disabled students who were refused UC before August 2020.
The torturous work-around
The work-around to the new Universal Credit (Exceptions to the Requirement not to be receiving Education) (Amendment) Regulations 2020 (SI.No.827/2020) is explained here by Disability Rights UK:
“The only way around this is for the disabled student to make a claim for contribution-based New Style ESA (NSESA) - for which they will not meet the national insurance contributions entitlement conditions!
Despite this, following their NSESA claim, a work capability assessment will eventually be held. Only then, if a LCW decision is made, can any means-tested Universal Credit entitlement be awarded.
This torturous route is absurd. Worse, it undoubtedly has the effect of deterring Universal Credit claims by some disabled students. Some will not know to claim NSESA ‘workaround’ if refused and some may even not pursue their higher education course.”
Disability Rights UK
Even before this "restoration of intent", standard DWP operating procedure was to refuse a Universal Credit claim made by a full-time disabled student, because they hadn’t been determined to have a “Limited Capability for Work”, even though they had not actually been offered an assessment. Even if it’s clear they would qualify if they had, in fact, had a Work Capability Assessment (WCA)
This subject is something I have been meaning to write about for some time because it's a battle we have been through in the last year for my daughter, a disabled student. It's one that, as her dogged advocate, has taken a very negative toll on my own health.
Our Kafkaesque fight with the DWP
Last year my youngest, who is autistic, has ADD and Ehlers Danlos syndrome, started at a new university. She had to drop out after a year at her previous uni because of health problems.
She had spent the year in between recovering at home. I considered applying for UC just after she came home, but I knew that this could be a brutal process, so decided I couldn’t put her through it at the time. She had her PIP and we would supply everything else she needed.
However, by June, she was well enough to apply for a new course and was accepted at the university in London. I knew that there was no way she could work part-time as most students do. So we had to bite the Universal Credit bullet.
As it turns out, in the light of these regulations, applying when we did, BEFORE the start of the course, turned out to be vital. Even so, what ensued over the following months was worthy of a story penned by Kafka himself.
The DWP doesn't talk to...the DWP
As her advocate, in August 2019, I accompanied her to the JobCentre Plus. We explained what was happening the following month, and that, as I understood it, as a disabled student, she would be eligible for Universal Credit and housing benefit. I took all the information, tenancy agreement for where she would be living in privately-run run halls, PIP details and everything I was told to bring.
Buuut no…. We were told that as she was still at home, we would have to get a ridiculously-titled “fit note” to prove that she couldn’t work between now and the start of the course, a month away. It would have been helpful to be told this on the phone a week earlier, when I made the appointment to come as I could have brought one with me.
At this point, when I explained I was her advocate, I should also have been officially made an appointee. But no. I also foolishly assumed that because I was the appointee for her PIP with THE SAME DEPARTMENT, the DWP, this would follow over. Nope. Neither was she offered a Work Capability Assessment at this appointment, although she should have been.
I have no idea why any further health assessment for work capability is needed when someone has already “qualified” for enhanced PIP. The DWP already has all the medical evidence they need from the dehumanising Personal Independence Payment assessment process. But even though Universal Credit and PIP are run by the same department, apparently the judgement of one part of its office isn’t good enough for another.
So, we had to go back again to the local JC+ with the required "fit note". They still didn’t want to see the housing information because she hadn’t yet moved in. We would have to visit the nearest JC+ to the accommodation after she was there, which meant I would have to schlep all the way to east London, a two-hour journey, to do this.
The DWP seems to despise the people it is supposed to help
When you want to speak to anyone at Universal Credit, you are in a very long telephone queue, assailed by irritatingly repetitive messages to try their online system instead. Which, of course, you would have if that would have helped. By the time you get through, your eyeballs are bleeding. When you do use their online messaging system it's not at all guaranteed that anyone will reply, or if they do, that they will provide the right answer to your query.
In any case, because the first advisor didn’t immediately set up the appointeeship, they wouldn’t speak to me on the phone. I had to take the call up to my daughter’s room where she was then forced to mumble to the call handler that yes, she wanted me to be her appointee. I also have Legal Power of Attorney, but despite taking this document along to the first meeting, they didn’t make a note of it.
Our appointment to change the address and finally submit the tenancy agreement came at the end of September. The East London JC+ has an atmosphere of both contempt and desperation. Embattled-looking staff in cubicles (pre-pandemic, obv), determinedly avoiding eye contact with “customers” who forlornly wait their turn, perched on uncomfortable and insufficient seating, running down the centre of an open plan room. We duly gave in the information and were finally told my daughter would need a WCA. I explained that a face-to-face assessment would be very distressing and was told to apply for an exemption. I did and our GP wrote a letter backing this up.
Incompetence and obfuscation
We heard nothing further for weeks, despite repeated calls to find out what was going on. Each time there was an interminable wait. Each time I was told something different (and incorrect). Each time, I was spoken to without a shred of compassion or empathy, just clear disdain and lack of interest. I was told several times they didn’t have the tenancy agreement, which they did. I was then told they did have it, but it wasn’t the “right kind” of tenancy agreement, whatever that meant.
Then, on calling to find out what was happening with the WCA, the advisor refused to speak to me about the case, saying there was no record of my appointeeship. It had "apparently" been “lost” from the system, even though it was clear from their records that I was the ONLY person who they had spoken to or emailed in the whole of the claim. I couldn’t ask my daughter to speak to them to tell them to talk to me, because she was in London at university. This effectively left her without a voice. As I hung up, I wept, hot tears of frustration, anger and dismay, that what should be a straight-forward process had been made deliberately obtuse and opaque by the careless incompetence of call-handlers. None of them understood the rules on disabled students and didn't want to find out, either. I had a sneaking feeling my appointeeship record had been "lost" on purpose.
Denied Universal Credit, because no WCA
At the end of November, I got a call from a “decision-maker” to say that my daughter wasn’t eligible for UC because she hadn’t had a WCA. Gobsmacked isn’t the word. The decision-maker agreed it didn’t make sense, but hey, rules were rules. I could apply for a mandatory reconsideration, I was told, or apply for New-Style Employment and Support Allowance. This is contributions-based, so she would not be eligible, having never been able to work. However, this decision-maker had both a record of my appointeeship and the tenancy agreement. She was more than happy to speak to me, and with compassion. It seems you only need these skills at a higher level than a phone-drone in the DWP.
We awaited the official letter to confirm this refusal of UC so we could write to ask for a mandatory reconsideration—a delaying tactic if ever there was one. While waiting, imagine my surprise to receive a text with a date for a face-to-face WCA. Ignoring the request for an exemption. The health assessment centre insisted our case was still live. I explained we’d asked for an exemption. You won’t get one, he said. No one does. But she “might” get a home visit.
I gave up trying to find out the truth and sent the mandatory reconsideration letter. I was exhausted. But I couldn’t give up; just as all through the SEND journey, it wasn’t about me, but about getting my child what she needed.
By now it was December. No word about the reconsideration but the health centre contractors (who clearly don't talk to the DWP either) decided she could have a home visit. So I just went along with it. Having a stranger in her tiny (and frighteningly expensive) student room was never going to be a happy occasion. The doctor stayed precisely 10 minutes, having actually read the medical notes I had provided beforehand. He could see for himself that she would be unable to work to support her studies. He left his umbrella behind too.
Silence... until the MP calls
Three months and two complaints to DWP went by (one unanswered). In the second, I said if I didn’t hear back I would contact my MP, Jeremy Hunt. As. if by magic, within a week, just before lockdown, I had a call from another decision-maker at DWP to say my daughter had been accepted as having Limited Capacity for Work. They’d changed their mind and she was eligible for Universal Credit, after all. They admitted she should have been offered a WCA on application, which may have avoided much of the delays (or may not)
Despite this, two more months passed without any sign of the back-payment of UC and housing benefit (we had been paying her rent for her because she didn’t have enough income)
Fed up, I contacted Jeremy Hunt after all, with all the information and a request for help. While I don’t share Mr Hunt’s politics (obviously), my experience is that he is a very responsive and effective constituency MP.
Thanks to his repeated intervention (even he couldn’t get them to do it right first time), DWP has now issued an apology, which was so mealy-mouthed they had to clarify that’s what it was. I had to calculate the amount they owed myself, using entitledto and contact them several more times online until they got it right. And no, you can’t blame it on the ‘rona, the decision was made back in March.
Is it worth it?
Even though my daughter has now qualified, the money she receives will be reduced to almost nothing in September because they deduct the student finance maintenance loan, on the grounds that it's "income" even though it's a loan. They divide the loan by the number of months of study and then subtract that from the monthly entitlement of UC and the additional disability payment.
It's still worth applying for because of the housing element, and the fact that during the summer break, she received the full amount (and housing benefit if she had stayed living away from home) However, for some bizarre reason, you don't qualify for housing benefit under the rules (as far as I can make out) if your halls of residence are run by the university, instead of by a private company off-campus. This means disabled students who need this money to fund their rent, will not be able to take advantage of any on-site campus accommodation that they may need to make attending university feasible in the first place.
A judicial review
I became aware of a potential judicial review being handled by solicitors, Leigh Day, about this very subject. It involves Sidra Kauser, a 22-year old disabled masters student who has been refused UC and not offered a WCA. She is left with just £122 a month to live on, which has to pay for everything she needs, such as food and travel, clothing and any socialising. Her claim, which was heard in early July, argues that the failure to carry out a work capability assessment is irrational and unlawful.
The new DWP "clarification" says "The purpose is not to enable a person to be referred for a work capability assessment in order to determine whether they have LCW, so as to then satisfy the exception.” A perverse statement that would make Kafka proud.
"It completely leaves out how a disabled student is able to get out of the Catch 22 situation of not being found to have a limited capability for work but given no opportunity to have a work capability assessment to show this. Can the policy intent of the new regulations really be to deny benefit to those people who are entitled to it?"
Ken Butler DR UK’s Welfare Rights and Policy Officer Disability Rights UK
Be prepared for 2021...
The difference with our case is that, fortuitously, we did apply BEFORE my daughter started at university, while she was still at home unable to work, and she should have immediately been referred for a WCA. So if your disabled young person is planning on heading for university, apply for UC the moment they finish school/FE at 18, in the May/June, and ensure they are given a WCA. Gather everything you need before the time to apply. Have your doctor's note for an exemption/home visit and “fit note” to cover the summer at the ready to save time. Otherwise, they will either miss out or you will have to go the circuitous route that will leave you tearing your hair out.
Are these new regulations even lawful?
Disability Rights UK says these new regulations were not subject to a referral to the Social Security Advisory Committee or any equality impact assessment before being issued, casting doubt on the Government’s commitment to ensure disabled people’s access to education. DRUK intends to lobby for the rescinding of these new regulations and for direct entitlement to Universal Credit for disabled students.
This is something we wholeheartedly support. For my daughter, her Universal Credit and housing means that when she does go back to uni she will be able to pay rent and eat without bankrupting her parents in supporting her to do so. That is, once we have again traversed the landmines of renewing a housing benefit application (as she’s been at home during the pandemic and so had no rent to pay).
Personally, this journey has had a hugely negative effect on my own mental health and chronic pain condition, as I have sought to shield her from the effects of a heartless administration that has made it difficult and opaque at every turn. I am an educated person, used to dealing with official admin, so it is no surprise that disabled people either do not know, or have been rejected for a support they are entitled to.
This is no way to run a system that is supposed to serve vulnerable people. It is truly a disgrace. But it is par for the course for this cruel government that only cares about its own.
Also read
- Explaining the inexplicable: why the government won the SEND coronavirus judicial review (round one)
- Autistic children unlawfully denied care assessments: Your parent carer group can help further research
- DfE on SEND failures inquiry: We’ll get back to you later (and it’s not our fault)
- SEND risk assessments and preparing for a return to school (or not)
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Tania is an experienced broadcast and print journalist & author. She also runs a PR, web & social media consultancy, SocialOro Media.
Tania is a rare disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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