In May, we celebrated the United Nations International Day for Families by collecting experiences from families across our global network. We heard from 30 members in 20 countries about the challenges families, and in particular, female caregivers face – including the support that they need.

On June 24, we hosted a webinar to share and validate the key messages that we have heard from our network about families.

Families are at the core of the disability movement, and of Inclusion International’s work.

Sue Swenson, Parent and President of Inclusion International

Why is Inclusion International working on the care and support agenda?

The ‘care and support agenda’ is the international push to build systems that make sure people get the care and support they need, rooted in their human rights.

This includes making sure that people with disabilities can live independently, make their own choices, and be fully included in education, work and community life.

The ‘care and support agenda’ is also about making sure that families who provide care and support get the support that they need. It pushes for community based support services that include families as partners, with support like respite, training and income support.

Our network knows that across the world, family members are the primary supporters of people with disabilities, and are often not given any financial support to do this care and support work. Family members also need to manage discrimination that they and their family members with disabilities face. This means that family caregivers face stress, burnout, and poverty, and people with intellectual disabilities they support and care for are at risk of exclusion and institutionalisation.

The care agenda doesn’t include the full spectrum of families. We need to advocate for specific provisions for families of people with disabilities.

Inclusion International Members from the Americas, during the June 24th message validation webinar

Our network being part of the conversation on the care and support agenda will help make sure that we are advocating for systems that include and support everyone – including people with intellectual disabilities and their families.

What big messages does our network have about care and support?

At the webinar, parents and OPD leaders Fadia Farah, Monica Cortes and Elena Dal Bo presented five key messages about the experiences of families of children with intellectual disabilities drawn from the information collected from our members.

Our members then discussed these key messages, sharing both personal experiences as family members, and reflections from their work with families as Organisations of Persons with Disabilities (OPDs).

Our network’s five key messages about families in care and support that were validated by members are:

  1. Families of children with intellectual disabilities are carrying too much on their own. They get little or no help, and the systems meant to support them are confusing and hard to access. Even when support is available it often doesn’t meet their needs, so families have to fill in the gaps.
  2. Families are often left out of everyday life. It’s hard to access programs like early childhood services, education, recreation, and sports, because there isn’t enough investment in making these spaces truly inclusive.
  3. Health care and early support aren’t equal for everyone. Some families can’t access quality health care or early intervention services. And when they do, the information they get is often outdated and negative about disability.
  4. Families’ voices aren’t being heard. Laws, policies, and services about care and support often ignore what families actually need
  5. Mothers are disproportionately affected. They are the most likely to leave their jobs to provide care and are often the ones most impacted by stigma and lack of support.

These big messages were validated by our network, and formed the basis of our submission to the UN Special Rapporteur on her recent call for information to support a report on the experiences of families of children with disabilities.

How can you get involved with Inclusion International’s work about care and support?

With support from the SAGE fund, Inclusion International is working to collect information about effective care and support models and to create resources to help our network engage with the care and support agenda.

Want to be part of this exciting new work on the care and support agenda?

Here are some different ways that members can get involved in Inclusion International’s work on care and support:

Take part in a care and support consultation at our World Congress

We will be hosting in person consultations with self-advocates and family members from across our global network at our World Congress in September 2025, in Sharjah, UAE. You can read more about the World Congress here.

Host a focus group in your country

If you are hosting a local, national or regional gathering, you could host a focus group with families or self-advocates about their experiences in giving and receiving care and support.

You can find the focus group questions and more guidance in our information package:

Download the Focus Group Information Package here!

Write a case study about care and support models in your country

Members are invited to develop a case study that outlines a good practice model of care and support in your country.

This could be a formal model, like a service supported by your country’s government, or an informal model, something done by families or communities.

You can find the case study template and more guidance in our information package:

Download the Case Study Guide here!

Plan a regional conversation about care and support

Are you interested in sharing experiences and reflections with other self-advocates, family members and organisations? You could bring together people from your region either in person or online to talk about how to get more engaged in the care and support agenda.

Contact your regional liaison on Inclusion International’s staff team to get support with this.

We need strong family based public policies. We need recognition of the role of families that will enable families of persons with intellectual disabilities to have ‘typical’ inclusive lives like other families. This cannot be achieved without your involvement!

Manel Mhiri, Director of Advocacy at Inclusion International