Stacey Lyons is a PhD Candidate at the University of Keele

Julie Hulme is a Reader in Psychology at Keele University

Throughout the pandemic, there has been a regular protest from some disabled students – “Why can universities manage to provide flexible and inclusive learning now, when it suits everyone, but they couldn’t when it was to meet our needs for access?”

As psychological researchers investigating the experiences of disabled students in higher education, we share their frustration, and thought that it was important to highlight some of the issues that we encounter regularly in our work.

Under the Equality Act 2010, all higher education providers have a legal responsibility to provide equality of opportunity for disabled students. This involves the student declaring a disability to the institution, claiming Disabled Students’ Allowance (DSA), and then a variety of support measures being put in place through provision of equipment, and a combination of externally-contracted support providers and the university itself.

This process should lead to students receiving the tailored support they need to access the highest levels of higher education – but in our experience (as a disabled PhD student and her academic supervisor), the reality is not quite so rosy.

The full package?

The Act states that providers must ensure access provision to all “benefits, services or facilities both educational and non-educational” and states that the duty to implement reasonable adjustments should be “anticipatory” rather than reactive after barriers arise.

But declaring a disability is not as simple as it may at first appear – often, medical evidence can take time to collate, and coming to terms with an identity as “disabled” might take even longer for the student to manage.

Requiring students to tick the “disabled” box and provide medical evidence before they can access support is not in the spirit of the Act and perpetuates a medical model of disability. This can be particularly challenging for students with mental ill health, or chronic illnesses such as myalgeic encephalomyelitis (ME), that are frequently poorly understood by medics, and can be socially stigmatised.

The “medical model” of disability is a deficit model which focuses upon the diagnosis of impairments or conditions within the individual. Effectively, it emphasises “what is wrong” with a student. In contrast, many disability researchers advocate a social model of disability, which focuses on society as the cause of disability and on the removal of those barriers. Instead of looking at “what is wrong” with a person, it focuses on “what is wrong” with the social environment that prevents the disabled student from accessing higher education on an equal basis to other students.

The Act encourages universities to fix the environment – and to adopt a social model, but many of the students we have talked to suggest that the medical model prevails.

It’s all about the money

We have heard many student stories that suggest an economic model of disability is prevalent in the ways in which universities implement support in the context of DSA, focusing on the cost to the university of implementing adaptations. Following their applications, students claiming DSA schedule a needs assessment with a DSA needs assessor.

This informs a review of needs report, detailing support that is required, which is agreed between the student and the assessor, and then is sent to student finance for review. At this stage in the process, the student voice can be lost and decisions become economic – around who is going to pay for the support.

Universities, of course, in the context of a challenging economic climate (particularly around Covid-19), understandably want to minimise their own expense, while DSA is capped at a maximum of £20,000 per annum – universities are required to provide any additional finance over and above this. The amount may seem generous at first glance, but for a full-time PhD student with multiple disabilities, the professional support required can be highly specialised, year-round, and full time.

The students with the greatest support needs are the ones who are most likely to suffer from an economic approach to disability. In this context, some universities are resisting funding support beyond the £20,000 cap, or elements of non-specialist medical helper support that cannot be funded by DSA, to try to reduce the financial burden on the institution.

To illustrate this, we cite an anonymous case study, in which a visually-impaired student was offered hundreds of hours of sighted guide support (funded by DSA except that it was inaccessible during lockdown, when the student was not allowed on campus), and initially declined the university-funded reader support that was necessary for her to engage with her studies. In this case, an arduous and stressful negotiation eventually allowed the student to receive reader support at the university’s expense.

This is hugely problematic – it places the burden of responsibility, and a significant amount of administrative work, on the student themselves. Not only does the student have to fight to claim the support to which they are legally entitled, they need to put in substantive effort to access it, often using their precious support time to negotiate for the support they require, rather than to engage with their studies.

While support workers are trained to work with students, students are not trained to work with support workers, or to advocate for their own needs, further increasing the burden upon them in gaining equality of access. In fact, for many disabled students, our research suggests that university is the first time they have responsibility to manage their own support needs.

Previously, support was passively received rather than actively managed. This can be a difficult learning curve at a time when they also need to manage other aspects of transition to higher education.

Wider providers

Once support has been agreed, the student has the responsibility to contact providers of equipment and non-medical helper support. While the system can run smoothly, some students report not receiving equipment before the start of their course. Equally, providers of non-medical helper support can struggle to provide appropriately trained staff, and rather than expressing this to the student (which could lead to them losing their contract), providers tend to ignore their attempts to get in touch.

A student can only request a change of provider if they have already accessed support, which leaves the student at a stalemate if they cannot get in contact or haven’t received support from their provider. During her Masters course, Stacey was five months into her studies before she met anybody for out-of-class support.

There is no accountability for students who are struggling with access, because universities recommend chasing up DSA, while DSA advises asking the university to help chase up the support providers, who are often external to the university. Students are left without support or guidance on how to manage the situation. The irony here is often that support is needed to manage the administration required to obtain adequate support.

A new context

Support for disabled students has also failed to account for the changed circumstances of students during the recent pandemic. Whilst their health condition may not have changed, the circumstances in which they are studying certainly have.

Education has changed drastically in response to pandemic restrictions. Disabled students may be clinically vulnerable and shielding. Similarly, those with mental ill health conditions may have experienced fluctuating needs as a result of lockdown restrictions.

But DSA has refused to change support recommendations arising from barriers encountered due to Covid-19 restrictions. This failure to recognise the impact of changing social and environmental conditions upon disabled students’ needs highlights the rejection of the social model of disability within DSA frameworks.

We noted above that the Act refers both to educational and non-educational experiences. Students in our research frequently report being unable to access social elements of higher education, partly because their energy is used up in accessing learning and negotiating reasonable adjustments. Likewise, much social activity at university is co-ordinated by Students’ Unions – separate bodies from the university itself, and so the university is not required to facilitate access. These challenges around engaging with university social life impact directly upon students’ sense of belonging, and the peer support that other students rely on to help them through challenging times.

The change that is needed

So what needs to be done? The first priority must be a review of DSA to enable genuine equality of opportunity and inclusion in the whole university experience. A review needs to incorporate the views of disabled students themselves, those who are experts in inclusive education, and those who are working on a daily basis with disabled students.

The social model of disability, recognising fluctuating needs in different socio-environmental conditions, must be prioritised over and above economic considerations and “tick box” medical diagnosis. Disabled students face too many barriers and stigma within higher education, without the systems designed to support them adding to these.

At institutional level, we encourage universities to listen to the diverse student voices in their communities, and to consider implementing student panels to help them to provide fair access. Students are experts in the experience of higher education, and their perspectives need to be respected, trusted, and acted upon.

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