Health crisis and disability: health information finally accessible to all

“When the challenges of disability advance, the whole of society progresses. This is how the press kit of the Interministerial Committee for Disability began, dated November 16. If the health crisis revealed the difficulties of access to health information for people living with a disability or far from the health care system (non-French speaking people, precarious people, etc.), it was also a catalyst for innovative solutions in the service of all thanks to the collaborative work of associations and public authorities.

Unprecedented mobilization in the service of the most vulnerable

Only a few days after the first lockdown was decided in March, the International Alliance for People with Disabilities (IDA) published ten recommendations, in particular on the need to inform people with disabilities and to train health personnel in the reception of these patients with special needs. Why ? Because better understanding health means having less fear, being more cooperative and ultimately being an actor in your health.

“Accessible information is the prerequisite for self-determination, that is, a person’s ability to make decisions that affect them. In the event of opposition from professionals or organizations, the person must be able to assert their rights to self-determination thanks to collective peer support, which is a vector of emancipation.“explains Karen Buttin, person with autism *.

Subsequently, health and medico-social actors, in particular associations, showed extraordinary creativity and responsiveness in producing communication tools and recommendations guides. It is impossible here to be exhaustive in view of the profusion of initiatives; examples include useful resources recommended by national associations such as APF France Handicap or Public Health France but also regional associations like the CREAI Ile-de-France in collaboration with ARS Ile-de-France and the CReHPsy Pays-de-La-Loire.

“The role of our association, in times of health crisis, is among others to provide reliable, accessible, transparent and honest information to people with disabilities and their loved ones, so that they remain active in their health and able to give free and informed consent. »Explains Marie-Catherine Time, regional representative APF France handicap Auvergne-Rhône-Alpes.

Let us also mention the tools of our association CoActis Santé, committed to access to health for all, such as the to post BD Health to explain the PCR test with pictures and simple words and the tip sheets HandiConnect to guide healthcare professionals in welcoming patients with disabilities, in particular the advice sheet ” How to communicate with a deaf / hard of hearing person? “.

State commitment

The sustained efforts of the State, in particular of the State Secretariat for Persons with Disabilities, deserve to be underlined: transcription of official documents in FALC (Easy to Read and Understand), speeches systematically translated into sign language and velotype, production, among other things, of a guide to better living confinement with an autistic child by the Interministerial Delegation for the national strategy for autism within neurodevelopment disorders and the platform to identify solidarity initiatives … The need to adopt accessibility reflexes in our society has been highlighted, in particular when the wearing of a mask has been made compulsory, preventing lip reading in deaf people who practice it.

In the end, it seems legitimate to think that the COVID-19 pandemic will have been a revealer of the adaptive capacity and resilience of health, disability, medico-social and solidarity actors. Let’s not stop there and use these tools as proof of concept to continue to work together for a more inclusive society where health information is accessible to all and where health professionals are trained to welcome patients living with a disability. Because what is done for the most vulnerable in our society is useful to everyone.

* Karen Buttin is a member of People with Autism for a Responsible and Innovative Self-Determination (PAARI), of the Board of Directors of Handi-Voice, a think tank of self-representatives that she represents on the Health and Well-Being Commission and well-treatment of the CNCPH and the Scientific Council of the Association for Research on Autism and the Prevention of Maladjustments (ARAPI), as well as facilitator-researcher at CapDroits which is a scientific and citizen approach.

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