CARES Act Funding Must Protect Services for Intellectual, Developmental Disabilities

The CARES Act signed into law last month included a seemingly hefty $100 billion congressional appropriation for the Public Health and Social Services Emergency Fund. At first glance, $100 billion seems like a massive infusion of cash, but when you consider who needs those resources, it quickly becomes clear that $100 billion will barely scratch the surface.

Hospitals have been a priority in the first disbursements of these funds, and rightfully so. Even as we flatten the curve, cities such as New York, Boston, Detroit and others are seeing a tsunami of hospitalizations, far outpacing the number of intensive care unit beds and ventilators available to COVID-19 patients. In these places, resources can’t come soon enough.

But the stark reality is that hospitals can’t treat and prevent the spread of this pandemic on their own. Far more people receive their health care services outside of hospitals than in them. Considering the number of people receiving community-based care — including long-term care for people with disabilities, in-home health services for aging Americans, people receiving hospice and palliative care, and more — we’ll never flatten the curve if our community-based health care systems fail, putting even more strain on our already overwhelmed hospital infrastructure. 

We know this to be true from the perspective of executive and frontline experiences. One of us is the chief executive officer of a provider of residential and day services for more than 5,000 Long Islanders with intellectual and developmental disabilities. In my work, I hear on a near-hourly basis from our 2,400-member staff, as well as the people we support, about the ways in which COVID-19 is wreaking havoc on our services and in people’s lives.

The other of us is a direct support professional, working on the frontlines for one of the nation’s largest providers of disability services. Long before COVID-19, the workforce of professionals like me was in crisis. Vacancy rates for direct support positions hovered around 20 percent nationally. In Indiana, where I live, high vacancy rates correlate with high turnover rates — 51 percent nationally, in fact — driven by long hours, low wages and inadequate appreciation for our profession.

It’s not hard to imagine how the pandemic is significantly exacerbating this crisis. DSPs cannot support people if they become ill, or if they have to stay home to care for loved ones who are ill, children whose schools are closed, or elderly parents with nowhere to turn.

Further confounding this challenge is the tenuous financial situation in which providers have long found themselves. With Medicaid reimbursement rates failing to keep pace with increasing costs of care and Medicaid programs in several states failing to leverage their full authority to help providers manage through the crisis, disability service organizations will careen off the financial cliff unless significant financial resources are delivered in short order.

Most of these organizations lack the reserves necessary to weather the storm on their own; one survey found that the average provider lacked the cash on hand needed to keep the doors open for a single month in the event of a significant revenue disruption.

In response to these challenges, ANCOR — the national, nonprofit trade association representing disability service providers to which both of us belong — is urging federal lawmakers on both ends of Pennsylvania Avenue to take swift action. For Congress, that means allocating an additional $20 billion in relief funds that are specifically designated for Medicaid-funded providers of home- and community-based services for people with I/DD. For the Trump administration, this means directing the Department of Health and Human Services to allocate the next disbursement of CARES Act funding to these providers.

The people we serve across this country, who rely on Medicaid because they were born with an intellectual, developmental or physical disability, represent one of the core groups this safety net was created for in 1965. There is nothing partisan about that, and this vulnerable constituency cannot be ignored.

HHS Secretary Alex Azar and his department, along with leaders on both sides of the aisle in both chambers of Congress, can ensure that people with disabilities have alternatives to hospitals if they become ill. They can also ensure that when the COVID-19 crisis subsides, our most vulnerable neighbors will still have options and resources for living a life of inclusion and independence, in the community where they belong, because the strong network of community-based providers remains intact.

When these leaders are ready to act, we stand as ready partners, committed to ensuring that people with disabilities in Indiana, New York and everywhere else in this country can access the services needed to fight this unprecedented crisis.


Robert Budd is chief executive officer for Family Residences & Essential Enterprises Inc. in Old Bethpage, New York, and president of the ANCOR board of directors. Keith Richardson is a direct support professional with ResCare Community Living Services in Indianapolis, Indiana.

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