COVID-19 has created an immediate crisis for people with developmental disabilities

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By Alisha Glover

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 professionals 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, for example, roughly one in six people with I/DD who contracted the coronavirus died — a much higher death rate than in the overall population. We know New York is not alone, and worry this experience is starting to repeat itself here in New Jersey.

Our DSPs have worked relentlessly with scarce resources and in homes with COVID-19-positive individuals, fearful each day of contracting the virus and transporting it home to their families. Yet they continue to work, understanding that our most vulnerable citizens depend on them for care, support and companionship. Social distancing is impossible when the people we serve require intimate services: feeding, bathing, using the bathroom and more.

Now, Medicaid-funded providers are at risk of closure because a lack of federal relief is making it nearly impossible to cover massive overtime expenses, salaries for the additional staff needed to maintain proper health and safety protocols, hazard pay for DSPs supporting those who test positive, and the costs of PPE. 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, rather than being relegated to large, state-run institutions. The stakes are too high for this situation to continue.

My organization, Dungarvin New Jersey, is already seeing how the pandemic is forcing us into an impossible financial situation. With day programs shuttered since March 17, we’ve seen a massive loss of revenue. But our expenses are skyrocketing. Our DSPs have the responsibility of caring for people with significant support needs under normal circumstances. Add in the pandemic, and those challenges are grossly multiplied: our DSPs act as a family member would by providing domestic care, tending to health needs, and designing social and emotional interventions, all while receiving barely livable wages that are not commensurate with the risks they take by supporting people in their homes.

Although Congress already committed $175 billion in funding for essential health care workers through the Public Health & Social Services Emergency Fund, the U.S. Department of Health & Human Services has yet to allocate a single penny of that aid to Medicaid providers. Therefore, New Jersey’s congressional delegation — especially Representatives Andy Kim, Bonnie Watson-Coleman, Chris Smith and Tom Malinowski, whose constituencies include the people my organization supports — must exercise its critical oversight authority to ensure HHS immediately stops overlooking the pandemic’s forgotten faces.

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 New Jersey to live independently. Representatives Smith, Kim, Watson-Coleman and Malinowski: now more than ever, we need your support to ensure the right resources get into the right hands, before it’s too late.

Alisha Glover, M.Ed., is the state director of Dungarvin New Jersey, LLC.

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