UPDATE JUNE 2025: On May 22, 2025, the House of Representatives passed the reconciliation bill (H.R. 1) by a close vote of 215-214. Due to successful advocacy efforts from the Down syndrome and broader disability community, this bill did not include drastic changes to Medicaid financing such as block grants and per capita caps. However, it did include other proposals that would effectively cut federal financing of Medicaid through work requirements and other methods and would limit states’ ability to cover additional costs which will lead to longer waitlists and cuts for Medicaid Home and Community-Based Waiver Services (HCBS). Although the changes proposed to the Medicaid program in the reconciliation bill are supposedly not intended to harm people with Down syndrome and their caregivers, over 100 national and state-based Down syndrome groups have signed onto a letter and accompanying policy brief showing why the House version will indeed result in negative consequences for the Down syndrome community.  

The bill now comes before the Senate, and we need to let the Senators know that the House version will harm people with Down syndrome and encourage them to reject it. Specifically, we are concerned that Community Engagement Requirements (work requirements), even with exemptions, will still have negative consequences for people with Down syndrome, their direct care workers, and their unpaid family caregivers by burying them in red tape, eliminating their benefits, and destabilizing the Medicaid system. We are also concerned that the bill’s limitation on states’ ability to increase taxes on medical providers removes a key source of state income that will result in cuts to “optional” Medicaid services such as HCBS, and the reduction in retroactive coverage from 90 days to 30 days will harm families receiving a new diagnosis of Down syndrome who tend to accumulate many medical bills during those first few months after birth. 

PLEASE CALL YOUR SENATORS AND ASK THEM TO REJECT THE HOUSE BILL AND OPPOSE ALL CUTS TO FEDERAL MEDICAID FUNDING INCLUDING “COMMUNITY ENGAGEMENT” (WORK) REQUIREMENTS.  

#HandsOffMedicaid #ProtectMedicaid