The Disability Policy Seminar (DPS) of 2025 took place in Washington D. C. this past April. The annual federal legislative conference was co-sponsored by The Arc, Autism Society, American Association on Intellectual and Developmental Disabilities, Association of University Centers on Disabilities, Caring Across Generations, Disability Belongs, National Alliance for Direct Support Professionals, National Down Syndrome Congress, United Cerebral Palsy, Self Advocates Becoming Empowered, and TASH. The event consists of two days of presentations that educate attendees about the important policy and advocacy issues facing the disability community, followed by one day of state organized meetings with congressional members and their staff, in addition to a Medicaid rally with participants.
After weeks of news headlines about Medicaid cuts and dismantling the U.S. public education system, it was not surprising that this opportunity to speak directly with elected officials was well attended. Five states (NY, MA, MD, NJ, and PA) had over 50 attendees this year and over 900 individuals attended the event. While the focus throughout DPS was on the potential $880 billion cut threatening this essential program, the greater call of unity and solidarity echoed through the marble halls of our national capital.
Medicaid. It should be mentioned that the threats to Medicaid are very real. At the time of writing this newsletter, we continue to wait for updates on what will really happen with all the proposed changes. It was explained that there are 5 main threats to Medicaid that total up to the $880 billion estimate.
- Block grants or per capita caps. This proposal would end the open match from the federal government, shifting costs to individual states.
- Cuts to the federal medical assistance %: This proposal would be particularly harmful to higher income states such as CA, CO, MA, MD. NH, NJ, NY, WA, WY, and VA
- Restrictions on provider taxes
- Work Requirements: This proposal creates an eligibility hurdle and puts significant burden on people with IDD to prove their potential exemption
- Repealing regulation
Rather than speculating the level of cuts that will be instituted, DPS encouraged the disability community to take these threats seriously. Contact your elected officials to say, “Hands OFF Medicaid!” and share you and your family’s story of how Medicaid has impacted you. You may also choose to share your story with organizations leading these advocacy efforts, such as AUCD’s Story Submission call.
Calls for unity. We’ve all heard and seen the poem by Pastor Martin Niemöller lately. It is a fitting call to action, reminding us that when any group of people has their human rights threatened, we cannot ignore it. We have already seen attacks on unions, misinformation about autism, and discrimination towards our transgender friends and family. The real tragedy is that the “divide and conquer” technique is working. Within our communities there are rumbles of infighting and by splintering our community into smaller groups, we weaken the potential power we possess.
Disability rights should be a priority for every single American. Healthcare access should be a priority for every single American. Academic freedom should be a priority for every single American. And if you are not a student, or a researcher, or disabled, or an immigrant, or transgender, or a union member – truly ask yourself who will be left to stand beside you and speak? As an organization that focuses on the sibling experience, we recognize that siblings include all these identities and many other intersections of humanity that make each and every family unique. This is a call for us all to stand together. To protect the rights of all people. Because together we are stronger.