Stories from ANCOR
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Stories from ANCOR

The Crisis Before This Crisis That Can No Longer Be Ignored

Before the words ‘coronavirus’ and ‘covid-19’ were in everyday lexicon and social-distancing was prescribed to all eight billion of us by the world’s doctors. Before every car commercial used the same soft baritone to tell you that they are here for you during “these unprecedented times”. Before the idea of a new barter system with toilet paper as its most prized commodity became much too close to even joke about. Before it all, providers of supports for people with intellectual and developmental disabilities were already facing a crisis.

If you’re in or around these circles, you’re probably tired of, and have likely grown to disdain, the term ‘workforce crisis’ — the catchphrase used to package the persistent and growing challenges of recruiting, and retaining, enough workers to directly support people with intellectual and developmental disabilities.

It’s been the dragon in the cave that has proved unslayable, primarily due to the inadequacy of the tools given to defeat it. It sits perched, roaring and unavoidable as a constant reminder that for decades now — perhaps even longer — society at large has been okay with excluding resources from this essential, health-sustaining, inclusion-creating workforce.

This has left providers between a rock and a hard place, tasked with delivering high-quality supports to empower people with disabilities to live inclusive lives within the community, but with minimal resources as governed by federal and state Medicaid programs.

Consequences of such nonchalance have manifested in this valuable workforce being relegated to low wages, long hours and inadequate appreciation. The natural byproducts of this untenable system are high rates of turnover and vacancy, making it difficult to maintain a consistent level of quality, and leaves people leveraging these supports in a constant state of flux (which can exacerbate everything from social anxieties to medical health risks).

The stakes have always been high, but they’re now beyond comprehension and must be addressed.

Despite this, providers weave magic to ensure high standards of care, and many direct support professionals develop innovative workarounds to improve the lives of people with disabilities. Many such stories are documented by ANCOR’s annual Recognizing Excellence publication, the most recent edition of which was released last week.

It is against this backdrop that covid-19 presents itself to providers. Though there is no silver lining to a virus that’s already infected over two million and whose total death count — a number already difficult to comprehend — will be excruciating, it has highlighted the cracks in society deepened by centuries of negligence. Indeed, the coronavirus pandemic offers a glimpse into the challenges provider organizations have long juggled, but to cope through the current pandemic and beyond, disability providers can no longer accept scraps. The stakes have always been high, but they’re now beyond comprehension and must be addressed.

Finally, national media outlets are paying attention to the localized crisis compounding covid-19’s impact on the disability community.

An article in The Washington Post highlighted the challenges of securing personal protective equipment (PPE) for a not-yet-classified-as-essential workforce, employed by providers that are taking steps to extend hazard and overtime pay despite not yet having any funding to do so. A piece circulated via The New York Times further revealed that testing for the vulnerable population served by direct support professionals has been hard to come by which, combined with a lack of access to PPE, saw many staff members contract the virus — some succumbing to it.

At the state level, the Chicago Tribune features firsthand accounts of direct support professionals setting aside personal fears to take extraordinary measures, and risks, to support individuals with disabilities through this crisis. In Idaho, KIDK News 8 spoke with the executive director of Idaho Association of Community Providers, Lydia Dawson, who explained, “If we lose our workforce, we lose our services. That’s as clean and blunt as we can be about it.”

Of course, Idaho and Illinois aren’t alone. We’re seeing stories of similar challenges piling up in Texas and Minnesota and New Jersey and — you see where this is going. The only reason it isn’t easier to list the states where community-based disability providers aren’t struggling is because there may not be any.

The task of our national leaders is to acknowledge the depth of these fissures, and to do what’s necessary to fill them. Our federal government must step in to ensure providers have access to PPE, funding to sustain its existing workforce and attract new professionals, plus other resources including but not limited to access to testing, telehealth capabilities, no-contact methods to deliver medications and anything else required to adequately support people with I/DD.

Attempting to solve a crisis within a crisis isn’t ideal, but the workforce crisis that existed before covid-19 has gone unheard and unaddressed despite years — decades — of advocacy from ANCOR, other leading national advocates, providers themselves and the families they support. The hurdle is at its highest point, but it must be cleared to have a chance at avoiding a conclusion that’s already teetering on the verge of catastrophic.

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Committed to people with intellectual & developmental disabilities and the providers who support them

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André Floyd

André Floyd

Communications Specialist, ANCOR

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