Digital development makes it possible to develop new educational materials for people with disabilities and to facilitate their integration. But the regulation of these new practices is intended to be reinforced by the public authorities.
In the premises of the Arche in Paris, an association that welcomes people with disabilities, it’s snack time, and the good smells of chocolate cake are felt as soon as you enter. Behind the stove today, Mehdi and Masita, who come to l’Arche to take part in daily activities.
“Often, these are people who are not able to work”, specifies Julie, specialized educator, in charge of accompanying them. This Wednesday, November 14, it is therefore a cooking workshop for Mehdi and Masita who have been holding a tablet in their hands since the beginning of the afternoon: it explains to them all the stages of the activity, from shopping to the tasting.
The cooking recipe is one of the applications developed on tablets by Auticiel, a company which “puts digital technology at the service of the integration of disabled people with cognitive disorders”, specifies to Tech&Co, Sarah Cherault, president and founder of Auticial.
“We really want the apps we offer to be a compensation tool,” she says.
For this, Auticiel offers ten educational applications that support the user in all daily tasks: dressing, shopping, cooking, studying, or even communicating. But “it is not a medical device”, wishes to clarify Julie Renault, scientific director of Auticiel.
Soraya Kompany, who participated in the drafting of the 2005 disability law, as director of cabinet at the interministerial delegation, insists on the fact that “today digital technology is everywhere in our lives, so it is an enabler of inclusion for people with disabilities than having access to these essential tools”.
“These tools are shaking up our ways of doing things”
Very concretely, Auticiel’s applications detail each step of an activity using a very precise breakdown. The user is guided by voice assistance, images and illustrative videos. With each sequence carried out, the user confirms that it has been carried out to move on to the next one.
That afternoon at l’Arche, Mehdi was in charge of the tablet. First step, shopping. Masita and Mehdi know the place well, so they are done quickly. Eggs are good, Mehdi ticks “ok” on his tablet, the same goes for flour, milk, and so on. Back at l’Arche, Julie, the educator, puts the oven on to preheat. All the ingredients are laid out on the table, the preparation can begin.
Julie Renault, scientific director of Auticiel, is never far away. As she does several times a month, she came to observe the use of the applications. “I come regularly, the land represents 50% of my work”, she specifies. And Sarah Cherault adds: “It is thanks to the feedback from field workers, users, relatives of people with disabilities, that our tools have been able to evolve and come closer to needs”. To imagine and develop its applications, Auticiel also relies on its scientific and ethical committee made up of neurologists, doctoral students and researchers.
Since its launch in 2011, Auticiel has had 12,500 beneficiaries and works with 750 medico-social establishments. “It’s true that this tool shakes up our ways of doing things”, recognizes Julie the educator. While the chocolate is melting, she gives a hand to Mehdi and Masita while explaining that “these digital tools allow the young people I accompany to gain autonomy, and me to devote more time to each one” . The president wishes to clarify that “the idea is absolutely not to replace caregivers”. The arrival of digital has nevertheless changed Julie’s way of working and she had to follow a training course provided by Auticiel.
While Mehdi breaks the eggs and validates each step, who can access his progress, on an application offered by a private company? Data access users is the key point of these digital solutions. The statistics reported by Auticiel relate to progress, the time spent on the tablet or even the success rate. “It is indeed sensitive data, so it is stored on approved health data hosts”, explains Sarah Cherault. Regarding access to data and user progress, Auticiel ensures that there are special access rights depending on the person: parents or health professionals. “If we have to use data for research or educational purposes, we anonymize them”, continues the founder.
Regulations that need to be strengthened
Auticiel is currently working on the development of a new tool: the empowerment program, which will use algorithms and artificial intelligence. Thus, the qualitative and quantitative data reported by all users will be used to develop algorithms capable of building a course according to the needs of the person and which will readjust automatically. “We want to finely capture the data so that it can enrich research and best support people with disabilities,” adds the president.
Problem, the company is groping. What regulations or digital ethical framework should be followed in this specific case? “As for our educational content, we follow the recommendations of the UN and the methods called TEACCH and ABA validated by the Haute Autorité de Santé. As far as data and digital supervision are concerned, for the moment we above all follow the ESMS plan”. The ESMS plan, set up as part of the Ségur de la santé, supports medico-social establishments in their transition to digital.
Sarah Cherault points to the significant delay in digital technology in the medico-social environment: “for digitalization, we need to collect data, set up objectives and it is not yet something usual”, deplores- she. The State needs feedback from the field to put in place appropriate public policies and move in the direction of the protection of sensitive data.
Sarah Kompany also wishes to recall that “if digital technology can be at the service of the integration of people with disabilities thanks to specific tools, daily uses must also be adapted because this can also be a source of exclusion”.
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