Disability Rights and Inclusion by Design: Built In, Not Bolted On 

In conversation with Amy Karageorgos, Senior Advisor & Annie Di Paola, Advisor, Disability Rights and Inclusion at Save the Children

Designing for Inclusion from Day One

Q. Why are Disability Rights and Inclusion (DRI) essential to Save the Children’s work in the U.S. and globally?

Amy: Children with disabilities are among the most excluded and face heightened risks of violence, exploitation and poverty. At Save the Children, we know that to achieve progress for all kids, inclusion cannot be an afterthought—it must be embedded in the design, delivery, and evaluation of our programs. This approach strengthens impact, quality, and accountability; ensuring no child is left behind.

Annie: In the U.S., many of the systems families rely on—education, healthcare, social security, support in emergencies and beyond—weren’t built with children with disabilities in mind. Yet every child has dreams, talents, unique experiences, and the same human rights. Still, children with disabilities continue to be left on the sidelines.

Save the Children supports families navigating special education and disability services, helping address instances where children are left out. We partner with local disability leaders and organizations, so our programs are grounded in disability rights, creating a better tomorrow for children with disabilities and their families.

Q. What are the biggest challenges children and families with disabilities face globally?

Amy: Nearly 240 million children with disabilities face higher rates of poverty, limited access to quality healthcare and other critical services, and are far more likely to be out of school—often missing out entirely on basic learning and participation in everyday life.  

These challenges stem from societal barriers, inaccessible systems, lack of inclusive services, and persistent stigma. Addressing them requires rethinking systems so that education, community life and work are accessible for all.  

While we have seen progress over 20 years since the UN adopted the Convention on the Rights of Persons with Disabilities, there is still a long way to go. More children with disabilities are participating in programs, and we have stronger data and evidence of what works, but truly inclusive systems require listening to local communities, sustained funding and stronger commitment from governments and the international community. It’s vital that organizations like Save the Children address the gap between vision and reality.  

Overcoming Myths and Challenges About Disability Inclusion

Q. What is one common misconception about disability inclusion and how is Save the Children working to address it?

Annie: A common misconception is that inclusion is too hard, expensive, or specialized. But families are not asking for complex solutions—just clear communication, flexibility, accessible environments, and being asked what they need rather than making assumptions on their behalf. Inclusion starts with listening and learning together.

That’s why at Save the Children, we’re working to embed inclusion principles across everything we do—from strengthening partnerships with Organizations of Persons with Disabilities (OPDs) to co-designing programs with children with disabilities and their families rather than for them. When we replace assumptions with listening, the misconception that inclusion is too difficult starts to disappear.

Q. How is Save the Children addressing DRI in humanitarian action?

Amy: Crises amplify existing inequities. Children with disabilities are too often left out from accessing life-saving aid, face greater risks of violence, and disruptions in the essential services they rely on to meet basic needs.

DRI in humanitarian settings must be built into humanitarian action from the start. That means providing accessible information, creating inclusive child-friendly spaces, ensuring the availability of quality assistive devices and rehabilitation support, and fostering meaningful participation.

Designing inclusive humanitarian responses improves reach, effectiveness, and accountability for all. This also strengthens systems, reduces long-term harm, and recognizes children with disabilities as having equal rights and valuable perspectives to contribute. When programs are designed this way, everyone benefits.

Driving Systems Change—One Classroom at a Time 

Q. Can you share a story of how Save the Children is addressing barriers children with disabilities and their families face in the U.S.?

Annie: Students with disabilities make up about 13% of U.S. public school enrollment but account for more than three-quarters of those subjected to restraint and seclusion. They’re also disproportionately suspended and expelled compared to their peers.

These aren't small disparities—they reflect systems that too often respond to a child's unmet needs with exclusion instead of support.

In response, we adjusted our school-age approach to be based on children’s individual needs, shifting educators from punishing to reading behavior as communication and adjusting support around the child.

That's how we help drive systems change: one child, one classroom, one educator at a time. Our goal is a mindset shift that transcends our programs into the school districts and communities we partner with—so children are supported, not harmed, by systems meant to serve them.

Q. Can you share an example of how Save the Children has integrated disability inclusion into the design of one of our programs?

Amy: Multipurpose Cash Assistance has been transformative for families in crisis, but gaps remain in reaching children and caregivers with disabilities, who often face greater barriers and costs. Save the Children is working with global and academic partners to make cash programs more inclusive by improving how vulnerable families with children and caregivers with disabilities are identified. We’re also strengthening evidence on what works.

Beyond cash assistance, our disability-inclusive early childhood development program, Building Brains, supports children from birth to age three by meeting a wide range of developmental needs and equipping caregivers to provide responsive, individualized care.

Ultimately, the goal is to shift disability inclusion from an add-on to a core measure of program quality.

Innovation in Action: Representation That Matters

Q. What are the strategic partnerships making this work possible?

Annie: One of our strategic partners is national disability rights organization The Arc, helping us build disability representation into our local community impact coalitions—the local groups guiding early learning outcomes—from the start. Together, we’re working toward community-wide change in early learning outcomes for children with disabilities.

We're piloting this approach in Alpaugh, a small town in Central Valley California, where our local community impact coalition is bringing in more representation from the disability community to shape decisions that impact children's futures.

The Arc is currently training coalition members on DRI and helping us recruit local people with disabilities, parents of children with disabilities, and professionals working to advance DRI, so the people most affected by these decisions are the ones making them.

Beyond recruitment, the coalition is changing how it operates—from accessibility and plain language materials to flexible participation options—so involvement is possible for everyone. These learnings are being embedded across all our community impact work.

Q. What gives you hope when you think about the future of disability inclusion for children and families?

Amy: Youth with disabilities are not waiting to be included—they’re demanding and claiming space in decision-making spaces, coming together to make sure their voices are heard, and running for office to shape the policies that affect their lives and communities. Their leadership marks a shift from tokenistic consultation to meaningful influence.

I’m encouraged to see disability inclusion becoming more central to broader conversations about equity, intersectionality and outcomes for children globally. Like discussions about who risks being left behind and what it truly means for societies to be inclusive.

Organizations leading the change like Save the Children acknowledge they can, and should, do more to advance DRI, which reflects a growing willingness to address gaps and strengthen practice at scale.