It’s time to acknowledge the valuable role of direct support professionals in our communities

On the campaign trail, investing in caregivers was a key feature of President Biden and Vice President Harris’ platform. Since taking office, the administration has signaled that it intends to make good on its promises by including significant provisions for paid family leave, child tax credits and more in the president’s proposed COVID-19 relief package.

These efforts should be applauded, but they also serve as a reminder of the need to clarify what we mean when we talk about caregiving. Often, the moniker conjures images of Gen Xers caring for their aging parents, or young moms juggling career demands against the demands of parenthood after returning from maternity leave.

But when we talk about caregiving, we ought to ask: Caregiving by whom? And for whom? These questions allow us to see who is typically overlooked in conversations about caregiving.

One such group is the more than one million direct support professionals (DSPs) in America — workers on the frontlines supporting people with intellectual and developmental disabilities (I/DD) to live and work in the community, instead of relegating them to institutional or other isolating settings.

The direct support workforce has been in crisis for decades. According to the latest data, turnover rates average 43 percent nationally, while the median pre-tax annual salary just barely crosses the $25,000 threshold. As you might imagine, this crisis has been exacerbated significantly by the COVID-19 pandemic.

As providers of community-based disability services who employ DSPs have been painfully reminded in the past year, supporting people in their homes 24 hours per day is cost- and labor-intensive. A 2020 survey of 700 organizations found that the average provider was forced to spend an additional $77,000 per month to cover overtime, training and PPE expenses. Nevertheless, DSPs have risen to the occasion as they always do, keeping people safe at home and ensuring they remain isolated from the coronavirus, but not from their communities.

As we look to the future, the question that looms large is whether life beyond the pandemic will mark a return to the broken Medicaid system that has for decades prevented providers from recruiting and retaining enough qualified professionals to deliver high-quality care to everyone in need. This is also the question driving a report just published by our organizations, United Cerebral Palsy and the ANCOR Foundation.

The Case for Inclusion 2021 spotlights how COVID-19 has exacerbated longstanding crises in the field of disability services and offers more than a dozen concrete steps lawmakers can take to ensure the long-term sustainability of Medicaid-funded community-based I/DD services.

During the pandemic, there have been a range of regulatory flexibilities authorized at the state level in response to the pandemic, such as the flexibility to deliver supports remotely or to leverage telemedicine services. These flexibilities have been nothing less than transformative for people with I/DD but could be potentially devastating if rescinded when providers are still grappling with some of the worst effects of the pandemic.

Though initially intended to be temporary, our report argues that this regulatory relief must be made permanent if providers are to continue ensuring the people they care for have the options and resources they need to remain engaged in the community.

At the federal level, the Case for Inclusion argues that there are several meaningful, moveable and manageable steps the Biden administration and the 117th Congress should take to strengthen community-based I/DD services during the pandemic and beyond. From steps to broaden the pipeline of qualified DSPs, to initiatives for testing new payment models that incentivize person-centered outcomes, these policy recommendations, if adopted, would rewrite the script on disability inclusion in America.

Too often, we think about the post-pandemic world as a return to normal. But given that constant crises were already the norm in the Medicaid disability system, a return to pre-pandemic conditions is the last thing people with I/DD and their providers need.

Instead, public policymakers at all levels of government must bolster the ability of providers to not only survive the pandemic but also to ensure that our caregiving systems are sustainable long after today’s public health emergency has subsided.

Barbara Merrill is CEO of ANCOR, a nonprofit trade association representing more than 1,600 community-based I/DD service providers. Armando Contreras is President & CEO of United Cerebral Palsy, whose 58 affiliates in the U.S. and Canada deliver high-quality services to more than 150,000 people with I/DD.