Ways to Advocate

LuMind IDSC joins other advocacy organizations across the United States to call for immediate actions to safeguard vital resources for individuals with Down syndrome and other disabilities. Proposed policy changes will disproportionately impact the Down syndrome community, with potential negative repercussions for research funding, education (including IEPs), Social Security, and medical services.

It is easy to feel powerless; however, we know from experience that the collective voice of the Down syndrome community can be very powerful and effective. We have outlined essential actions you can take as a family with links to organizations currently providing easy ways to advocate. We encourage you to contact your federal legislators and educate them on how proposed policies will impact your loved one.

• The Department of Education (DOE) is facing potential cutbacks. The Administration has proposed dismantling the department and moving key offices, including the Office of Special Education Programs (OSEP), to the Department of Health and Human Services. This could significantly diminish the rights of students with disabilities and lead to a loss of resources, accountability, and coordination. The Individuals with Disabilities Education Act (IDEA) is an education and civil rights law that must remain within the Department of Education to ensure that all students with disabilities receive the education they deserve.

• Medicaid, which provides essential health care and long-term services to over 72 million people—17 million of whom live with disabilities—is under threat in Congress. Cuts, caps, and work requirements would harm access to critical health services, including Home and Community-Based Services (HCBS), which help individuals live independently and receive in-home care, job training, and support. Many states already have waiting lists for these services, and further cuts will only worsen this crisis.

• Recent proposed cuts to the National Institutes of Health (NIH) funding could significantly impact Alzheimer’s research, including studies focusing on individuals with Down syndrome. The NIH is a primary source of funding for biomedical research, and reductions in its budget may lead to decreased support for critical studies. The proposed NIH funding cuts include capping indirect expenses—such as administrative and facility costs—at 15%. This policy change would reduce the amount of funding available for essential research infrastructure, potentially hindering ongoing and future studies on Alzheimer’s disease, including those related to Down syndrome.

We urge you to invest just five minutes for each topic to amplify your voice. The Down syndrome community has demonstrated its strength in the past, such as when we overcame discriminatory language that restricted access to the latest Alzheimer’s drugs. Now, when so much is at stake, it is crucial to unite as a community and speak with one voice about the devastating consequences of these policies. Click on the images above to send information directly to your state representatives.

The Down syndrome community demands equal access to drug therapies that could change our lives. People with Down syndrome deserve equal access to, and insurance coverage for, life-changing drugs.