Families making sense of a complicated system to get the support they need.
In the Young Families Project we speak to parents and siblings of people with intellectual disabilities about their lives. Our findings are presented in a series of essays.
This is part 2.
In this second essay (PDF) we focuse on the challenges of navigating a complex care system.
Our main goal is to show how difficult it is for parents of children with intellectual disabilities to get the support their child needs, and how little support there is for them in this process. We also want to show the role siblings play.
“I can’t say we did not have any guidance. That wouldn’t be true. We had some, but it isn’t systematic enough. It has to make sure everyone gets support. Because if you don’t speak the language, or if you don’t know how to navigate the system, then you are lost and your child is too. Nobody’s going to look out for you.”
Read the full essay here: If you don’t know how to navigate the system then you are lost and your child is too (PDF)
Young Families Project
- Introduction: What parents and siblings of children with intellectual disabilities face every day.
- If you don’t know how to navigate the system then you are lost and your child is too.
- Financial hardships in the family, and the difficulty of balancing work and care.
- Fighting for a good education for their loved one with an intellectual disability, and balancing school and care.
- Struggling with mental health and wellbeing and neglecting their own needs.