Op-ed by Inge Volleberg, researcher and coordinator at Inclusion Europe.
What gets measured gets done. And what doesn’t get measured… remains ignored. A fate familiar with most issues faced by people with intellectual disabilities and their families.
That’s why Inclusion Europe surveyed 29 European countries on situation of people with intellectual disabilities and their families. The results, published in the Inclusion indicators 2023 report, give a good understanding of what the situation is. And also help to make the famous European disability data gap a little bit smaller.
Here are some of the main findings
- The right to decide and vote:
In 26 countries, legal capacity can be stripped away, removing someone’s right to make their own decision regarding finances, living arrangements, and marriage.
7 countries deny voting rights to people under guardianship, while 15 restrict people with intellectual disabilities from standing for elections.
Does it mean that people with intellectual disabilities are second class citizens?
With the upcoming EU elections, the question of a huge target group not allowed to vote is barely seen as a problem. How could policies change in favour of those in need of change, if they’re not even allowed to vote? Disregarding the question, solves the issue.
- Segregation in housing, education and employment:
A staggering 750,000 people with intellectual disabilities are confined in harmful segregated institutions, while an additional 39,000 ‘live’ in psychiatric hospitals. The report underscores the alarming exclusion of individuals with complex support needs from deinstitutionalisation efforts.
In 21 countries, adults with intellectual disabilities often lack access to proper housing, relying on family members who have to stay primary support providers. This reality starkly contrasts with the typical living arrangements for adults in Europe, where young people move out around 26,4 years old [1].
While 1,1 million children with intellectual disabilities are included in mainstream schools, 700,000 are still segregated in special schools, and 20,000 receive no education at all.
Why are still so many children with intellectual disabilities not allowed to be with other children?
And how could we expect people with intellectual disabilities to take part in the employment market when they’ve been deprived of an education?
No wonder the worse Inclusion indicators scores are those of employment that remain dishearteningly below 10% for people with intellectual disabilities.
Even more ironic: if a person with intellectual disability manages to find a job and earn a normal salary, which is already not a given, in 17 countries, they risk losing their disability benefits. Those same disability benefits to compensate for their disability and supposed to help them participate in the labour market! A catch 22 situation
In a continent grappling with workforce shortages, the untapped potential of people with intellectual disabilities – but also of their families who had to stop working to take over care responsibilities – this is a huge missed opportunity for governments and businesses.
The Inclusion indicators report shows why it is so important to have data. It reveals that many European countries are not inclusive for people with intellectual disabilities: denying the human rights to decide and to vote, which are both protected under the UN CRPD, and segregating people with intellectual disabilities in housing, education and employment.
I hope that many disability activists will use Inclusion indicators to ask their governments or the EU to do better for rights and inclusion of people with intellectual disabilities and families. And to provide data about it too.
Related information
[1] When do young Europeans leave their parental home, Eurostat, 2023 https://ec.europa.eu/eurostat/web/products-eurostat-news/w/ddn-20230904-1
Photo credit: Inclusion Europe. Retrieved from the cover of the report Inclusion indicators 2023 – Rights and inclusion of people with intellectual disabilities in 29 European countries