COFACE Families Europe was present at the national day of parents of APF France handicap (member of COFACE Disability), which was organised by parents of children and adults with various (dis)abilities. The theme of the 2019 parents days was “Deinstitutionalisation: Not without us!”.
There were many questions:
- Does DI mean going back to live in the family?
- Does DI mean cutting costs in services?
- What living or housing arrangements do persons with disabilities want?
- How will the care and support be organised if it is decentralised to different types of living arrangements?
- What living arrangements can be considered institutions and what living arrangements provide true independent living and choice for residents or tenants?
Parents are supporters of the shift to community-based services and rethinking the current models to support persons with disabilities, and therefore need to understand what this “shift” means in practice and how it will impact their daily lives. Instead of using the word “deinstitutionalisation” there was a preference for French terms such as “transition inclusive” and “transformation de l’offre”.
COFACE Families Europe was present to provide a European perspective to these French discussions, with an update on EU actions, update on DI trends across countries and a reflection on what the new generation of community-based services should look like.
Some pointers for the development of community-based services for persons with disabilities:
- They should be based on a lifecycle approach considering the different needs of children with disabilities (with or without parents) and adults with disabilities (who found their own family or community);
- For a successful DI process shifting towards community care, the starting point of services should be both the needs of the person with care and the needs of the wider family. We must not forget that holistic support to families is key in this “transition”.
- As we review and reform current services, we need to ensure they recreate (at the very least) an adequate service mix of housing, support and care, as well as considering wider accessibility of the environment, education, labour market, leisure activities.
- Community-based services will look very different from region to region according to existing health and support systems, services, networks, infrastructure, housing markets, and more, hence local DI mappings are an important first step in any shift to community-based services, in order to fill gaps in service provision and ensure services are provided equally across a region.
More information about the Journée Nationale des Parents 2019 and the testimonials of parents here: http://interparents.blogs.apf.asso.fr/