“I hate being called resilient – because if the supports were in place I wouldn’t need to be called that.”

A parent in Canada

Around the world, care and support systems are leaving people with intellectual disabilities and their families behind. Too often, families are praised as selfless or resilient for stepping in to fill the gaps left by inadequate systems.

Today, Inclusion International is launching Don’t Call Me Resilient, a new global report documenting how people with intellectual disabilities and their families access care and support systems around the world, and what they say needs to change.

We wrote this report by asking people with intellectual disabilities and their families to share their stories. We collected surveys and held group discussions across 42 countries, and gathered real-life examples from Inclusion International members. 

What the report found

The report reveals that care and support systems are failing people with intellectual disabilities and their families in several different ways:

  • Most people with intellectual disabilities and their families cannot access care and support services that meet their needs. This is true around the world, even in countries that appear to have strong care systems.
  • Where formal care and support services exist, they are hard to find, not accessible and are often delivered in segregated settings – violating the Convention on the Rights of Persons with Disabilities (CRPD).
  • Without meaningful access to services, families fill the gaps themselves. This lack of support creates risks for families, including burnout, isolation, and institutionalisation of people with intellectual disabilities.
  • People with intellectual disabilities have care provider roles, but care and support systems are not responsive to their double role as people requiring care and support and care providers.

How to build more inclusive care and support systems

The report provides recommendations for policymakers on how to deliver more inclusive care and support that works for people with intellectual disabilities and their families.

It outlines both immediate actions and longer-term reforms across five pillars of an inclusive care system:

  • Based on choice and autonomy
  • Provides high-quality community-based services
  • Takes a whole family approach to meeting needs
  • Affordable and appropriately resourced
  • Rooted in self-advocate and family leadership.

Governments have the opportunity and the responsibility to build inclusive care and support systems that respect rights and respond to people’s real lives.

Don’t Call Me Resilient is a call to action. It is time to stop expecting people with intellectual disabilities and their families to prop up systems that are not fit for purpose. Instead, we must invest in inclusive care and support systems that make inclusion possible for everyone.

Read the report