Davis Leads Ways and Means Democrats in Calling on SSA to Address Disproportionate Denial of Social Security Benefits for Individuals with Sickle Cell Disease
FOR IMMEDIATE RELEASE
Contact: Jill Hunter-Williams (202.340.2700)
WASHINGTON, DC – Today, Worker and Family Support Subcommittee Ranking Member Danny K. Davis (D-IL) led Democratic Members who have served on the Worker and Family Support Subcommittee during the 118th Congress in sending a letter to Social Security Administration (SSA) Commissioner Martin O’Malley calling for action to address high benefit denial rates for individuals, particularly children, who are disabled by Sickle Cell Disease (SCD) and the disproportionate harm to Black children and other low-income communities caused by SSA’s current regulations:
“High benefit denial rates under the current regulations disproportionately harm Black children and low-income families, and are not consistent with Congress’s intent that children with severe health challenges receive income support so that their parents can care for them…for many parents, SSI helps keep the lights on and food on the table while they manage their children’s care,” wrote Ranking Member Davis and the Subcommittee Democrats. “We urge you to make revising criteria for hematological disorders to address SCD in consultation with experts a top priority for your first 100 days at SSA.”
Ranking Member Davis was joined on the letter by all of the Democratic members who have served on the Worker and Family Support Subcommittee this Congress: Rep. Judy Chu (D-CA), Rep. Gwen Moore (D-WI), Rep. Dwight Evans (D-PA), Rep. Jimmy Gomez (D-CA), and Rep. Terri Sewell (D-AL).
Read the full letter here or below:
Commissioner Martin O’Malley
Dear Commissioner O’Malley:
As Members of the Ways and Means Committee Subcommittee on Worker and Family Support, which oversees Supplemental Security Income (SSI), we are writing to ask that the Social Security Administration (SSA) take immediate action to ensure that individuals, particularly children, who are disabled by Sickle Cell Disease (SCD) qualify for the support they need. High benefit denial rates under the current regulations disproportionately harm Black children and low-income families, and are not consistent with Congress’s intent that children with severe health challenges receive income support so that their parents can care for them.
The Centers for Disease Control estimates that one in every 365 Black children is born with SCD, which puts them at high risk for infection, vision loss, stroke, and asthma, and subjects them to debilitating pain. Comprehensive care is critical to reducing mortality and managing pain. For many parents, SSI helps keep the lights on and food on the table while they manage their children’s care.
As you know, SSA revised the criteria for meeting the SCD “listing” (sometimes called step 1) in 2015 without a change in law by Congress. At that time, many experts commented on the proposed regulation to warn that it would disqualify children clearly disabled by SCD from qualifying for SSI, compounding the financial hardship their parents suffer to oversee their medical care and purchase other help and supplies not covered by health insurance. At the time, SSA declined to revise the proposed regulation, and instead responded that SSA would assess very sick children who no longer met the listing at a later step in the disability determination process. The implication was that those who needed help would still qualify, consistent with the fact that there was no change in the law.
That implied outcome appears to have proven incorrect. According to analysis provided to the Subcommittee, the share of children denied SSI for SCD using the listing has gone from an average of 62.3 percent in the years leading up to the change to an average of 76 percent since the new policy went into effect. The data strongly suggest that children are not simply qualifying at “step 3” of the process, as implied in the regulation discussion – they are being denied benefits under the new policy. The denial rate for SCD at step 3 has also increased sharply, from an average of 58.2 percent to an average of 72.8 percent, presumably as more individuals are denied at step 1.
We urge you to make revising criteria for hematological disorders to address SCD in consultation with experts a top priority for your first 100 days at SSA. We would be happy to meet with you to discuss further the urgent challenges our constituents and Black families across the country are facing, and the need for action.
Thank you very much for your attention to this matter.
Sincerely,
Danny K. Davis
Ranking Member
Subcommittee on Worker and Family Support