Deinstitutionalisation and families

Today I spoke during a EESC hearing about challenges of the transition from institutional to community-based support for persons with disabilities and the role of families as their carers.

I talked about priorities in deinstitutionalisation, one of which must be making the changes work for people with complex support needs too.
They are often left behind in the process.

I was struck by how some of the speakers described families. One of them literally called them “a barrier to deinstitutionalisation”. I come across this quite often, and it bothers me.

Families are those who dedicate their lives to providing care and support.

Families are those who started a lot of the existing community-based services.

Families are those who would do almost anything to avoid their daughter/son or sister/brother to be institutionalised.

I’m not saying families are perfect. Some treat their members with disabilities badly. Some have concerns and questions when it comes to deinstitutionalisation. Some may oppose *specific changes* based on their understanding of them.

But sure as hell they are not “a barrier”.

They do for deinstitutionalisation more than most of us will ever do, by a mile and some. If nothing else, by providing most of non-institutional support and care.