This past March, a group of advocates representing Together for Choice visited staff from the Centers for Medicare and Medicaid Services (CMS) and legislators on Capitol Hill to share the mission of protecting and expanding choice for people with intellectual and developmental disabilities (I/DD). Our group included self-advocates, family advocates, service provider staff and TFC board members, and represented Elevare Community (CA), Noah Homes (CA), Camphill Village (NY), Pathfinder Village (NY), Triform Camphill Community (NY), and Marbridge Foundation (TX).
We met with CMS at their home office in Baltimore to voice our support of the new HCBS guidance and expressed gratitude that the voices of people with intellectual and developmental disabilities (I/DD) and their families were heard. CMS addressed our remaining questions and concerns that some states may still default to a narrow definition of “community” when enforcing the Settings Rule, but they assured us the guidance as written is meant to shift Medicaid oversight to quality of life offered at settings, not the type of setting as suggested by the previous guidance.
While states still reserve the right to make interpretive decisions on the Settings Rule, CMS assured us of their commitment to due process for settings placed under heightened scrutiny, including continuing to consider the perspectives of residents and family members with greater weight than vague, unfounded, or sensationalized complaints from anonymous commenters.
On Capitol Hill, we met with legislators and staffers to discuss next steps to strengthen the Settings Rule, as well as the future of specialized wages for workshop employees with I/DD. TFC’s pro bono lawyers arranged meetings with staff from 30 offices representing five states. We met with healthcare and disability staffers, as well as legislators themselves including Sen. John Cornyn (R-TX) and Rep. Antonio Delgado (D-NY). In light of the updated guidance from CMS, we explained the importance for Congress to act on the Settings Rule, recommending they pass formal legislation to protect a wide variety of residential options to supplement CMS’s guidance which is subject to changes by future administrations. We also addressed recent legislative attempts to phase out the 14(c) certificate, and that bills like the Raise the Wage Act, while well-intentioned, would deny many people with substantial I/DD the opportunity to work a meaningful, productive job (see Zagalo, pg. #).
FC coordinates multiple trips to Washington, D.C. every year to advocate for the rights of people with I/DD to have a wide array of residential, employment, and social options. We are always looking for more advocates to help us develop relationships with lawmakers and promote the message of choice, so be on the lookout for future announcements of visits to the Hill. TFC will also provide our members with advocacy toolkits later this year to help guide advocacy initiatives in Washington, D.C., state capitals, or other lawmakers’ offices.
Scott McAvoy and Ashley Kim, TFC Board Members