Since the law of July 22, 2013 , all universities must set up dedicated reception and support for young people suffering from chronic illness or disability, in the form of a multi-year master plan . They therefore have, at a minimum, an identified manager who carries this policy. But there are significant organizational differences from one establishment to another.
Although each university has a structure (or at least one interlocutor) dedicated to disability compensation, the diversity of the university system complicates the harmonization of resources and protocols. And this is all the difficulty for the students concerned, who very often find themselves lost in the multiple steps to be taken in order to benefit from assistance and compensation.
This is one of the reasons why nearly half of the students with a serious chronic illness have never called upon the specific university service of their establishment.
To fully understand the difficulties of these steps, let us take the case of Léa, a fictitious young woman who nevertheless represents a large part of the young people encountered during my research work . She is a student from the next school year. Suffering from a chronic illness, she needs support from the university to adapt her education. How should she do it?
From high school to university
The transition from high school to higher education is complex for any young adult and all the more difficult to manage when one is suffering from a chronic disease. In high school, Léa was entitled to accommodations. She had a PAI (Individualized Reception Project) which listed the adaptations she could benefit from to compensate for her health problems. This type of device is protocolized according to national directives.
The higher education sector is too large to agree on a single type of disability policy. It lists a set of plural establishments with various attachment structures. A common base is required, but each university and college offers specific inclusive aid. Léa will have to get acquainted, with an interlocutor or a reception structure, the existing services and the procedures to be carried out.
She was a student before she got sick. It will therefore have to complete all the procedures incumbent on all students. And with the same autonomy, she will have to apply herself for any university aid that may be offered with regard to her health issues.
The potential aids are numerous. They relate to accessibility, educational support, technical and human assistance, or even scheduling and examinations.
To take more specific examples, it could be note taking, interpretation in French sign language and adaptation of documents (enlargement of characters, braille, speech synthesis, etc.).
In general, the proposed arrangements are decided in consultation with the student so that he or she is at the heart of his or her support. We must not delay too long in starting the process, because there must be a certain delay for the compensations to materialize.
In Léa’s situation, the disease is chronic and can therefore evolve during the year and cause her other effects which will require additional adjustments. In this case, she will be able to make a new recourse, because the aids evolve with regard to the situation and the health event.
It is for this reason that the chronically ill are not the only ones to be concerned by this support. Any student with a health disorder that permanently or temporarily hinders their ability to attend classes and learn can benefit from compensation and must therefore apply to their university or higher school.
One of the pitfalls, moreover, is that many students do not feel concerned when they hear about “handicap service”. However, most university services labeled in this way are not reserved for students with recognition of their disability. Any specific need (even one-off, in the case of a fracture, for example) can be accompanied by these devices. Chronic disease is also categorized as a disability situation by academia.
The great heterogeneity of the higher education system imposes on students with special needs autonomy in the procedures to be carried out. While there is, as we have seen, a whole range of devices, they too often remain unrecognized.
For high school students with special educational needs who read this article, it is important to remember that it is important to familiarize yourself with the existing systems in the schools in the sectors that interest them, as soon as possible. Many of the students I interviewed refrained from training, thinking that they were not accessible to them.
Reforms aim to facilitate the transition between secondary and tertiary education. There are links between high school and higher education, in particular “open door” type events organized by universities. However, these do not sufficiently evoke the support systems linked to disabilities. The search for targeted information on existing compensations requires a personal investment on the part of the students concerned.
Author Bio: Lucas Sivilotti is a Post-doctoral researcher, doctor in education and training sciences at the University of Bordeaux