Report: Families Should Not Have to Carry Everything Alone

Parents and siblings of children with intellectual disabilities on their every day.

Hundreds of children with an intellectual disability are born every day in Europe. There is a lot of love, joy and happiness – but also, the lives of their family members change.

We spoke with parents and siblings of children with intellectual disabilities to learn about their every day joys and struggles. This is the report about what they told us: Families should not have to carry everything alone (PDF).

We spoke with 9 parents and 6 siblings from 10 European countries. The parents told us about their lives with a child with an intellectual disability and complex support needs now, and the siblings looked back on their childhood. We are grateful they shared their time and experience.

First, we published what they had to say in individual essays dedicated to 5 main topics:

1. What parents and siblings of children with intellectual disabilities face every day.
2. If you don’t know how to navigate the system then you are lost and your child is too.
3. Financial hardships in the family, and the difficulty of balancing work and care.
4. Fighting for a good education for their loved one with an intellectual disability, and balancing school and care.
5. Struggling with mental health and wellbeing and neglecting their own needs.

Now you can read all of the topics combined into one report:

Families should not have to carry everything alone (PDF).