Lawmakers Urge SSA to Improve Data Exchanges and Protections for Foster Youth and Children with Sickle Cell
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Summary
Members of the work and welfare subcommittee urged Commissioner Frank Buscagnano to accelerate monthly data exchanges with state child welfare agencies, strengthen monitoring of representative payees for foster children receiving SSI, and address concerns about sickle cell denials identified by a Blue Ribbon Panel.
Members of the House work and welfare subcommittee and the Social Security subcommittee pressed Social Security Commissioner Frank Buscagnano to accelerate data exchanges with state child welfare agencies and to address reports that children with sickle cell disease are being denied Supplemental Security Income (SSI).
Rep. Darren LaHood, chair of the work and welfare subcommittee, told the commissioner that approximately $190 million in SSI and Social Security benefits went to children in foster care in 2023 and stressed that monthly data exchanges are “very important to ensure that state child welfare agencies are the appropriate representative payee.” LaHood said a 2018 bipartisan law required SSA to establish data exchanges with state child welfare agencies and noted a Government Accountability Office (GAO) finding that not all states participate. He asked the commissioner to ensure exchanges operate and to improve transparency on representative-payee monitoring.
Commissioner Buscagnano said SSA has been working actively on data exchanges and committed to follow up with the subcommittee: "I'm happy to come back to you on a more detailed answer. We have some more work to do ourselves, but I'm happy to work with your office on anything they'd like us to do," he told lawmakers.
Rep. Danny Davis and others raised sickle cell disease as a concern after SSA commissioned a Blue Ribbon Panel at the National Academy of Sciences to study advances in treatment and SSA rules. Davis said an initial report found SSA is denying some SSI applicants with severe sickle cell disease because the regulation has not kept pace with medical science. The commissioner said he would "give it my full attention tomorrow" and agreed to report back after reviewing the panel's findings. The panel also prompted SSA to publish plain-language guides to help applicants with sickle cell apply for SSI.
Ending: Lawmakers sought commitments for clearer timelines and enhanced monitoring. The commissioner pledged to work with the subcommittee and to provide additional follow-up, including on how SSA will expand state participation in monthly data exchanges and ensure representative-payee accountability.