What Is The Process, Why Is It A Problem, And How Can We Change Things?
As a wheelchair user with cerebral palsy in the UK, I often hear those outside of the disability community ask disabled people if they have “registered disabled” or “registered” with certain support schemes. We must ask: what is the process of “registering”? Why are these kinds of processes a problem? How can we as individuals begin to improve the situation? I will be discussing these questions from a UK viewpoint as that is where I am based, and these are the systems I myself have experienced.
Above is an open-ended text box from a PIP form. Submission by Emma Dobson
When it comes to "registering as disabled", there is no specific “register.” However, there are ways that the government decides who is and is not disabled enough to receive support. The most common disability related benefit in the UK is known as Personal Independence Payment, or PIP, similar to Social Security Disability Insurance (SSDI) in the U.S.
The process of applying for PIP starts by filling out a form. The application is accessed by a paper form that is sent to you through the post, or by answering the questions from the form with an advisor over the phone. This is in contrast to the U.S. in which these applications are mostly done online. As you can see from the image above, the PIP form often includes open-ended text boxes to fill out, alongside simpler tick boxes.
In order for the nuances of my condition to be understood, I know I’ll need to fill in the text boxes alongside the tick boxes. For disabled people who struggle to write legibly due to their condition, like myself, this can be a problem. Not only does this amount of handwriting cause me pain, but it leads to my handwriting becoming more and more illegible. Will the assessors even be able to read it? Will the pain even be worth it?
Those who choose to complete the paper form have three months to fill it out and send it back with any necessary documents, (though I am not sure if the time was extended due to the pandemic, as it used to be much shorter.) Once the application has been reviewed, you may be invited for an assessment. This may be over the telephone due to the pandemic, but it may be in person.
For my assessment, an assessor came to my house and went through the information I noted on my form. They needed to see whether I could walk, or do the other things noted on the form. They needed to decide if I actually needed the assistance I said I needed.
The assessors are typically through a company called Capita, and the requirements for them are to be a healthcare professional with a minimum of 1-2 years of experience in their healthcare field. Additionally, they must be registered with either the Nursing and Midwifery Council or the Health and Care Professions Council. Assessors then go through an intense five-week training course before completing a further six weeks of “on the job” training, shadowing a mentor. In the U.S. the initial application is typically evaluated by a social worker and often doesn’t reach a medical professional. The assessment is typically done by social services appointed medical professional.
Now, call me a cynic, but I don’t think eleven weeks of training seems like enough to judge anyone’s disability and then decide their entitlement to benefits, which can often be the difference between whether disabled people are able to live or not.
The form and the assessment are then looked at together in order to decide if someone should receive PIP, and how much they should receive.
You can challenge the decision if your claim has been rejected entirely, or you have been awarded a lower amount than you need, and you believe the decision is incorrect. This process is called “mandatory reconsideration.”
Mandatory reconsideration requires you to send a statement of why you think the decision is wrong, along with any documents to support your statement. These documents can be new medical evidence or reports from your specialists, but they must be evidence that you didn’t submit with your original application. You must send your request for mandatory reconsideration within a month of receiving your letter with the decision for your initial application, but there is not a timeframe or limit on how long the Department for Work and Pensions are allowed to take to reassess your eligibility. Since this is another long and arduous process, some disabled people struggle to put themselves through it even if they know their denied claim should be reconsidered.
Image credit: Getty Images
As if PIP isn’t difficult enough, another way in which the UK government decides who is and is not classified as disabled is through something known as the “Blue Badge” scheme. This is a badge which allows those who have it, or those who assist badge holders in driving, to park in disabled parking bays and other certain locations. These can be spaces such as on double yellow lines, which make it easier to get between a vehicle and whichever location they are going into.
While the application process for a “Blue Badge” can be completed online, it requires various documents. It requires you to submit a photo of the badge holder (i.e. the disabled person), a document for proof of their disability, proof of their address, and proof of any relevant benefits they receive. You then pay £10 (or £20 if you are in Scotland,) and submit the application. There can then be a wait of up to 12 weeks to find out whether your application has been approved or not.
Now that I have outlined what the systems are like here in the UK, why is the system a problem? The biggest problem is that it forces disabled people to constantly prove their disabilities in order to get the simplest accommodations and support, which is gatekeeping. These long processes often leave us feeling like circus performers who have to jump through hoops just to exist as disabled people and get help. These systems are often inaccessible, as is shown by the fact that there is no online application for the PIP benefit. For me, there is a bittersweet irony that comes with applying for a disability benefit via a written form when your disability affects writing legibly after long periods.
It is also odd to me that the assessors for PIP are employed by a private company rather than an impartial group. It makes it quite obvious that the whole process is about money and meeting quotas rather than actually helping people. In an ideal world, disabled people wouldn’t have to go through this hoop jumping assessment in the first place, but if we do have to be assessed, I’d rather it was done as a public service rather than a private company (where money plays a factor). Also, it should be done by people with more than a mere 11 weeks of training.
Once you understand the issues with the initial process, you must know that that is not the end of it. We have to be reassessed for the benefit every year even if your disability is lifelong and your need for the benefit will not change, like myself. I do not understand why these benefits need to be reassessed in situations like mine; it forces me and other disabled people to needlessly drag ourselves through the whole process again.
Additionally, the amount we are paid is pitiful, and barely covers the basics we need to live—if at all. This is particularly troublesome when you consider that being disabled is EXPENSIVE, with disabled people encountering extra costs of £425 a month on average.
We have to be reassessed for the benefit every year even if your disability is lifelong and your need for the benefit will not change.
Being disabled is EXPENSIVE, with disabled people encountering extra costs of £425 a month on average.
– Emma Dobson
There is the wait to get help, which can be several weeks. Disabled people do not have time to sit around and wait for help, we have lives to lead too!
Now, you may be wondering, “How can I help?” There are several ways I would suggest. First, support disabled people that you know, (or that you see campaigning online,) who are fighting the system. Whether this is through sharing and signing petitions, contributing to and sharing fundraisers, or simply providing emotional support through a listening ear for disabled people to vent about issues they face with the system.
Sharing petitions can be particularly impactful and lead to the introduction of actual change. A great example is the Oliver McGowan Mandatory Training in Learning Disabilities and Autism training which came about as a result of a petition and the subsequent support which forced it to be considered by the government.
The other effective way to help is in regard to attitudes around disability. We must move away from the ableist “scrounger” narrative and realise that there’s a problem with the system. We must believe that that’s not just “how it is,” (which is something you are already starting to do by reading this). Let’s call out issues and prejudice when we see it. Silence on these issues is almost as bad as actively voicing these prejudiced ideas. Most importantly, do NOT call someone out if you don’t think they are disabled and they’re using a disability accommodation. No one is the disability police and you are much more likely to invalidate a disabled person than you are to “catch” a “fraudster.”