“I am a quite a particular mum, as I am also a taxi driver, a sport instructor, a specialised facilitator and teacher, I am an emergency doctor, physiotherapist, nurse, pharmacist, administrative secretary, lawyer, interpreter, guidance counsellor, and dietician. This life, I did not choose it, I am carer of my child with an intellectual disability. I would like to first and foremost be his mother.” Says the video that launched by UNAPEI on 6th October, the day dedicated to carers.
The video is part of a campaign to show the burden that informal carers have to bear daily in order to provide support to their closest ones with support needs. Carers are parents, children and spouses who take care of a relatives in a situations of disability, fragility and dependency. In France we are talking of 8 to 11 million people, 90% of whom are a family member of the person losing their autonomy due to age, disability, chronic or disabling illness. Carers perform a multitude of daily functions that they should not carry alone. Without sufficient social recognition and support, they take on the task of supporting their loved ones in all areas of their lives and at all ages. In 2017 the COFACE Study “Who cares” described their daily realities and highlighted recommendations put forward by the carers themselves.
On the occasion of Caregivers’ Day, COFACE member Unapei also launched the hashtag #LeDroitdEtreJusteParent to reveal the daily lives of carers of people with intellectual and cognitive disabilities.
APF France handicap, which promotes equal rights, citizenship, social participation and free choice of lifestyle for people with disabilities and their families has different activities to support carers. This includes administrative and legal assistance and training courses to support, accompany and reassure them, as well as support to persons with disabilities. For the 6th of October APF organised a fundraising campaign to support their actions for carers.
It looks like something is moving in caregivers’ support. The national mobilisation and support strategy 2020 – 2022 “Acting for Caregivers” timely presented by the government on 5 October, aims to prevent the exhaustion and isolation of caregivers by diversifying and increasing the capacity of respite care facilities, by offering respite solutions and by giving them new rights, including compassionate care leave [AJPA – Allocation Journalière de Proche Aidant], which has been in force since 1 October 2020.
The quality of life of carers is intrinsically linked to the situation of their relative with a support needs, and Unapei therefore calls on the public authorities to implement a comprehensive, coordinated, high-quality support adapted to the needs and particularities of each person with a disability. The implementation of support provided by professionals is the only real, sustainable response to enable carers to be parents first and foremost. As long as national solidarity does not fully play its role in supporting their relatives with disabilities, measures must also be taken to take into account their role as carers and improve their rights.