The Data That Illustrates Why We Need “Better Care Better Jobs”

For years, the vast network of community-based providers of disability services in the United States has faced an unrelenting crisis: significant shortages of direct support professionals, or DSPs. DSPs are the workers on the frontlines, ensuring that people with intellectual and developmental disabilities (I/DD) have the support needed to live in the community—rather than being warehoused in large, state-run institutions.

When it comes to addressing this longstanding crisis within the direct support workforce, we know there’s no silver-bullet solution. A range of solutions together will be needed if we are to guarantee that every person with I/DD in our country has access to the high-quality long-term supports and services they deserve.

However, there is one underlying challenge that, if addressed, would go a long way in ameliorating the crisis: access to more and more robust data. With more and better data, we would have a deeper understanding of the contours of the crisis. Meanwhile, community providers and their advocates would be better positioned to make the case for the investments needed to grow and sustain the direct support workforce. These two factors are what ultimately drives ANCOR to lead advocacy efforts around better data collection, such as through the establishment of a Standard Occupational Classification for DSPs by the U.S. Bureau of Labor Statistics.

Of course, we’re not entirely without data, and there are significant data collection efforts happening across the country. One such effort on which we regularly find ourselves relying is the Staff Stability Survey, a project of National Core Indicators (NCI). NCI’s Staff Stability Survey provides a range of insights about the workforce challenges we face, such as turnover rates, vacancy rates, tenure, median hourly wages and more.

As appreciative as we are to have data from NCI and other sources, we’ve long wondered: Given the challenges we’re all well aware of, what are providers doing in response?

That question led ANCOR to set out on an effort in February 2020 to query providers from within our membership and beyond about the real impacts of the direct support workforce crisis. We wondered things like:

• Are providers discontinuing existing lines of service?
• Are providers turning away new referrals?
• Is high staff turnover making it difficult to achieve quality standards?
• What are the financial costs of high turnover?

We couldn’t take the curiosity any longer—so we asked! We fielded a survey that posed a range of questions, hoping to receive at least 150 or so responses. We blew right past that goal and received a whopping 805 responses from provider organizations of all shapes and sizes and in every corner of our country.

The number of responses alone signaled to us that providers and advocates are thirsty for the data. For that reason, we developed a new issue brief, The State of America’s Direct Support Workforce. Published late last week, this new issue brief describes the broader challenges related to the direct support workforce crisis and shares the topline analysis of the data we collected.

Now, given that we knew there was a high level of demand for these data, you might be thinking to yourself, “why did ANCOR wait until May 2021 to release these insights?” The simple answer is this: we collected data for a five-week period starting in February 2020. If you do the math, you’ll quickly realize what happened at the end of the data collection window that derailed our best-laid plans. In fact, our 805^th response was collected on Sunday, March 15, 2020—two days after ANCOR’s offices officially closed.

Of course, lockdown didn’t prevent ANCOR from continuing its advocacy on behalf of direct support professionals—to the contrary, it led us to triple-down on our efforts to support this essential workforce. However, we spent much of the pandemic recognizing that COVID-19 turned the workforce crisis on its head, and we realized that most providers could focus on little else besides the task immediately in front of them: keeping people with I/DD isolated from the coronavirus, but not from their communities.

Providers continue doing that important work to this day, but as the ups and downs of the pandemic continue, we realized two important facts. First, we could no longer afford to let these data go unpublished. Although the survey does not describe the impact of the pandemic on the DSP workforce, it does shed light on the precarious nature of the “old normal”—and explains why we simply cannot afford to go “back to normal” when this pandemic finally subsides.

Second, it illustrates that we now need more data—data which reflect the impact of COVID-19 on the workforce. For that reason, we have begin collecting responses to a follow-up survey, and we hope that you will not only complete the survey on behalf of your organization, but that you will also share it with other provider organizations in your network. Complete and share the 2021 DSP workforce crisis survey.

For all you do to advocate on behalf of the direct support workforce and the more than 1 million people with I/DD it supports, thank you. We couldn’t do it without you.

Download our new issue brief, The State of America’s Direct Support Workforce today.