People with intellectual and developmental disabilities are struggling during the pandemic

Since the COVID-19 pandemic began tearing through the United States, we've heard a lot about overloaded systems and the people who are suffering as a result. We've heard about our overwhelmed hospital systems and the doctors on hospital frontlines. We've heard about aging Americans and the nurses on nursing home frontlines.

But what we haven't heard about are people with disabilities-specifically those with intellectual and developmental disabilities (I/DD)-and the direct support professionals (DSPs) on the frontlines. In the midst of this crisis, people with I/DD are the forgotten faces; their DSPs the forgotten frontlines.

The coronavirus is silently tearing through the disability community and causing deaths that could be avoided with more government action. In New York State alone, roughly one in six people with I/DD who contracted the coronavirus died-a much higher death rate than in the average population. We know New York is not alone, and this experience is repeating itself across the country.

On the forgotten frontlines, DSPs are the essential staff that help people with disabilities remain in their homes and communities, maintaining their independence, staying safer at home and recovering more quickly when they become infected. DSPs are struggling with the same challenges as the broader health care community: lack of PPE, repeated exposure to the coronavirus and extremely long hours in the homes of the people they support are required to ensure the delivery of high-quality disability services. DSPs have been leaving their families, often without daycare options of their own, to care for individuals who are struggling with safer at home measures and do not understand why their daily routines, jobs and day programming have been disrupted.

While Congress and the Trump administration have rightly moved to quickly provide for frontline health care workers, they have repeatedly overlooked Medicaid-funded providers of disability services, including the DSPs employed by these providers, all at the expense of the health and well-being of our vulnerable neighbors with I/DD.

Now, Medicaid-funded providers are at risk of closure because of massive overtime expenses during the crisis. Rarely do Medicaid providers make the headlines for the incredible work they're doing during the pandemic, and when they do, it's for offering DSPs hazard pay or covering overtime. But make no mistake: these providers have no federal funding to do so. They're doing it because it's the right thing to do, but they have zero idea how long they will be able to sustain their services. If forced to close, the impact will be felt not only as this crisis continues to wreak havoc, but also well after the pandemic is over, leaving people with disabilities with too few options and resources to remain in their homes and communities.

The stakes are too high for this situation to continue. Congress has already committed funding for essential health care workers through the CARES Act, but the U.S. Department of Health & Human Services has yet to allocate any of the $100 billion in CARES Act funding to Medicaid providers. Therefore, Congress- U.S. Sen. T. Duckworth (D), U.S. Sen. R. Durbin (D), U.S. Rep. R. Krishnamoorthi (D) and U.S. Rep. S. Casten (D) must play its critical oversight role and ensure HHS takes immediate action to stop overlooking people with I/DD and the providers on which they rely.

St. Coletta of Wisconsin (providing services in Rolling Meadows, Palatine, Elgin, Roselle and Arlington Heights) needs this funding to assist in stabilizing their workforce, covering overtime pay, hazard pay and restart day programs when stay-home orders are lifted. Providers in the State of Illinois were already suffering from a funding crisis due to low reimbursement rates, competitive employment and large waiting lists for services of people with I/DD.

Without funding to accomplish all we need to do to ensure the health, well-being and inclusion of the people with I/DD we support, we don't stand a chance of keeping our doors open until this crisis ends. And when we're gone, so too will be the opportunities for people with disabilities in Northern Illinois to live independently. Senator Duckworth, Senator Durbin, Representative Krishnamoorthi and Representative Casten, now more than ever, we need your support to ensure the right resources get into the right hands, before it's too late.

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