To build inclusive health systems, people with IDD must be actively involved in shaping the policies that affect their lives. Their voices matter, and their health needs must be clearly visible in every policy-making space that impacts their well-being.
Raise Awareness and Support Advocacy
- Co-create public campaigns with people with IDD to promote positive representation and spotlight the health inequities they face.
Ensure Representation in Health Policymaking
- Guarantee formal representation of people with IDD and their organizations in global, national, and local health policy discussions and decision-making.
- Make participation accessible by providing accessible materials, inclusive spaces, and trained facilitators.
Fund Inclusive Policies
- Back policy initiatives with budget commitments that meet the unique needs of people with IDD. For example, Germany’s dental health reform offers more frequent checkups for people with IDD than the general population.
- Ensure clear implementation mechanisms to ensure budgets are allocated correctly and funding is truly inclusive.
Empower People with IDD through Human Rights Monitoring
- Ensure people with IDD can hold governments accountable by enabling their participation in human rights reporting and monitoring.
- Create enabling environments with necessary accommodations so people with IDD can be key stakeholders in documenting violations and sharing lived experiences.
In 2024, the legislature of the U.S. state of Washington passed the Nothing About Us Without Us Act (Washington State Legislature, HB 1541, 2024). It requires that all state task forces, work groups, and advisory committees working on issues affecting underrepresented populations include at least three individuals with direct lived experience with the issue.
The IDD advocacy community in Washington was quite active in the development and passage of this unique legislation.
Take Action
Invest in the visibility and voices of people with IDD. Greater investments in inclusion are necessary, and ensuring people with IDD have a say in those investments will make them as effective as possible.