Leading Through the Pandemic: Data and Stories about Where We’ve Been & Where We’re Headed

by Barbara Merrill, CEO, ANCOR

If we measure the pandemic based on when we all started working from home, we are now well into our eighth month, and a lot has changed, both in the world writ large but also within the provider community’s own little sliver of the world.

Though many of these changes have been far from ideal, there has been one positive development in recent months, which is the availability of more stories and data revealing the impact of the COVID-19 pandemic on people with intellectual and developmental disabilities (I/DD) and the providers who offer crucial support to keep them safe and healthy during the pandemic.

As a result, ANCOR has been able to publish or support two pivotal reports, both of which were released earlier this week. Just yesterday, we published Racing Against the Clock: Preserving Disability Supports During the COVID-19 Pandemic. This new ANCOR publication assesses the impact of the coronavirus on providers and profiles eight community-based disability service organizations that are showing remarkable resilience despite a mountain of challenges. And, just 24 hours prior to the release of Racing Against the Clock, we were proud to support two of ANCOR’s state association members—PAR in Pennsylvania and the New York Alliance for Inclusion & Innovation—in releasing a new study on case and mortality rates among people with I/DD in eight states.

Both of these new products were developed to educate providers and disability advocates about the harsh realities of this pandemic, and the insufficient nature of the relief providers have received to date from the federal government. Both are powerful tools to use for both state and federal advocacy, and both will be discussed tomorrow, October 30, in a members-only briefing at 12 pm EDT. I hope you can join us.

The mortality study released on Tuesday is particularly important for the critical data it provides. Capturing case and mortality rates in states representing about a third of the country’s population, the new report demonstrates that providers are doing a remarkably good job keeping the infection rate low, but doesn’t shy from the fact that when people with I/DD contract the coronavirus, they are nearly twice as likely to die compared to the general population.

And this is despite a myriad of challenges, including many documented in two fiscal impact surveys conducted by ANCOR earlier in 2020: plummeting revenues, skyrocketing staffing costs, the amplification of an already severe direct support workforce crisis, difficulties securing personal protective equipment (PPE) and more.

Importantly, the report reveals that few states are collecting the information we need to fully understand the scope of the challenges confronting providers and the people they support, and where data collection is happening, it is not done consistently. As a result, the analysis suggests that higher death rates among people with I/DD can be attributed to comorbidities, but acknowledges that more research is required to confirm this hypothesis.

What we can discern conclusively from the analysis is that although providers are keeping infection rates at a similarly low level to those experienced by the general population, the higher mortality rates reveal a failure to invest in the disability support system—and that’s where Racing Against the Clock comes in.

As that report illustrates, even though many providers have been able to access federal COVID-19 relief resources, such as those made available through the Paycheck Protection Program or the Provider Relief Fund, those resources have been often too little and sometimes too late. In turn, providers have been forced to make impossible choices about which people they can afford to support, which programs they can afford to continue and more. Given the experiences of the diverse range of providers profiled in Racing Against the Clock, we conclude that more investments are critical to support the ability of community-based providers to keep people safe, including resources to recruit, train and retain staff, and to secure PPE.

Although the findings discussed in both of these new reports weigh heavy on all of us, the good news is that our federal lawmakers have started to take notice, in no small part thanks to the advocacy of ANCOR members like you. A whole range of recent actions by lawmakers on Capitol Hill illustrate their growing attention to these issues, but most recently, we were heartened to see a letter written by U.S. Senators Patty Murray (D-WA), Elizabeth Warren (D-MA) and Maggie Hassan (D-NH) to the Centers for Medicare & Medicaid Services, urging the agency to collect data about case and mortality rates among people with I/DD living in group homes. Like us, these Senators recognize that we cannot reasonably expect to lower mortality rates without a better understanding of the situation, and we cannot expect a better understanding of the situation without clear, consistent data.

Whether the federal government uses its power to require this level of reporting will likely be determined by next week’s election and, no matter the outcome of the election, decisive federal action isn’t likely until the New Year. That’s why we need to make the strongest case possible to ensure you have the resources you need to support people safely through the winter. That’s also why I hope you’ll join us tomorrow for the release of Racing Against the Clock. Register today.   

Barbara Merrill is Chief Executive Officer for ANCOR. She can be reached at [email protected].