This International Day of Families, we’re putting a spotlight on the role families play in building inclusive care and support systems.

Across our network, families, including parents, siblings, and parents with intellectual disabilities, are pushing for systems that recognise the realities of their lives.

Families are often expected to provide care without support, are excluded from decisions, and left navigating services that don’t fit their needs. At the same time, people with intellectual disabilities are rarely seen as caregivers themselves, even though many are.

Transforming Care & Support

Through our new “Transformative Care and Support for People with Intellectual Disabilities and their Families” project, supported by the SAGE Fund, we’re working with our members to challenge how care systems are designed and delivered.

We’re asking:

  • What support do families and self-advocates actually need?
  • What models are working?
  • What barriers make it harder to give or receive care?

These questions will feed into case studies and a set of policy recommendations that we’ll take to governments and international bodies. 

The goal is clear: care and support systems that work for all of us.

Families Speak to the UN

We also recently responded to a call from the UN Special Rapporteur on the role of families in providing care and support to children with Disabilities. 

The Special Rapporteur is writing a report focused on families of children with disabilities, and asked for input from around the world.

We gathered responses from across our network. Families spoke about the pressures they face, including financial, emotional, and practical. 

Mothers often become the primary advocates for their children, navigating bureaucratic systems and advocating for necessary services, which can be emotionally taxing.

Family Member, Finland

They talked about being left out of decisions. About how support often comes too late or not at all. Mothers in particular shared how they carry most of the burden. And we heard from people with intellectual disabilities raising children of their own, who are often overlooked completely.

We made sure those voices were heard.

International Day of Families

This year’s theme for International Day of Families, Family-Oriented Policies for Sustainable Development, calls for serious investment in family supports. 

But that investment must include people with intellectual disabilities and their families.

Families need recognition […], and children with disabilities need to belong and be included in the family.

Pamela Somses, Namibia Association of Children with Disabilities (NACD)

Care and support systems must reflect real lives. That means listening to families, learning from their experiences, and building policies with, not only for, them.