Blog post by: Elizabeth Gosme, Director of COFACE Families Europe
Our mission in COFACE Families Europe, representing over 50 organisations from 23 countries, is to defend the rights of families in all their diversity, bringing this voice to the European institutions in Brussels through a wide range of tools, meetings, conference, trainings. We express political positions, initiate campaigns and also work in the field of research and training.
Although Europe does not legislate on family policies, many of the laws passed in Brussels have a direct or indirect impact on the lives of families, including in the disability rights field.
Our COFACE Disability platform advocates more specifically on the rights of families with disabilities: this includes bringing forth the realities of parents of a child or adult with disabilities, parents with disabilities, children with disabilities, but also more generally the rights of family carers and/or supporters of loved ones with disabilities.
The rights of persons with disabilities and the rights of their families are not mutually exclusive. Supporting the rights of persons with disabilities means taking into account their environment and, in particular, recognising the carers and supporters in their community.
There are so many personal stories of family carers and supporters that this general reflection will not do justice to that diversity. There are diverse family set-ups, with families living across households and countries, or multiple generations in one household. There are single parents and recomposed families, same-sex families, kinship families and more.
Disability is found across that family diversity, and family carers and supporters are therefore very diverse as well (of all ages, genders and social backgrounds). When recognised and supported by the State and professionals, they feel boosted and in a position to empower their loved ones with disabilities. But when they are ignored, not socially recognised, with no or inadequate financial allowances or professional support, sometimes forced to leave their job or schooling (for younger carers) to be fully available for their loved one, this can lead to difficult situations. With impacts on physical and mental health, mixed emotions, feelings of isolation, and family tensions.
Some family members want to take on the extra role of carers, while others wish to just be a “parent” or “sibling” or “son” to a loved one with disabilities. In order to fully empower persons with disabilities and their families, social protection systems need to be built with family resilience in mind ensuring that the right types of supports (and longer-term care if needed) can be provided to ensure smooth life transitions.
The more persons with disabilities receive community-based supports like personal assistants, more accessible environments (built, digital, heatlhcare..), work opportunities and fully inclusive education (from the start, including early childhood education and care), the more families can play the role of supporters rather than carers. In the meantime, as we transition to fully inclusive societies, family carers should be recognised and supported. This was the case in the 2022 Council recommendation on access to affordable high-quality long-term care..
This includes a mix of strong cooperation with professional support services to boost independent living, access to trainings if needed, community support groups to reduce isolation, financial support to ensure that homes can accommodate different types of disabilities, relay services to ensure family carers can have short breaks, and flexible working opportunities should they wish or need to work. You can check out COFACE Disability’s European Charter for Family Carers.
We will continue to advocate for a families approach to disability based on our S.H.I.F.T. guide, which advocates for a rethink of disability rights around five key dimensions:
Support-Human rights-Independence-Families-Transitions.