THE COMMUNITY SYSTEM IN CRISIS

The Crisis Now

People with intellectual and developmental disabilities (IDD) deserve the opportunity to lead full, meaningful lives. But most need support for everything from eating, bathing and administering medication to job and life-skills training. That support comes from a statewide network of community provider agencies and their dedicated, trained workforce of direct support professionals (DSPs) — a workforce that is in tragically short supply.

Long before COVID-19, community providers were already struggling to keep and recruit DSPs because of significant underfunding from the state. The current “Great Resignation” only worsens the existing problem as qualified caregivers seek higher paying, less demanding jobs. Unlike retail or restaurants facing staff shortages all over the country, providers can’t trim back hours or close on certain days. People with IDD need consistent, uninterrupted care — most need it 24/7, 365 days a year.

DSPs have been risking their own health and family time daily to keep people with disabilities safe and healthy. Sadly, these frontline heroes continue to be among the low-income workers hit hardest by the pandemic’s economic and societal fallout. And, more and more providers have been forced to shut down programs or homes and turn families away who need and deserve support.

The Solution

After decades of inadequate support, the state has increased funding to providers in steady increments over the past five years, including $170M in FY'22, a major portion dedicated toward implementation of the state's Guidehouse Rate Study recommendations, which provide a roadmap to stabilizing services.

This is a step forward, but not nearly enough to address the funding crisis facing agencies who care for people with disabilities. Additionally, historically high inflation has blunted the impact of DSP wage increases, and the percentage difference between the minimum wage and the state DSP wage rate has actually decreased over time.

The state must provide an increase of $246.8M to fully fund the Guidehouse Rate Study recommendations for FY'23.

Support HB4832 and SB4063.

Without this critically needed funding, the safety and well-being of thousands of people with disabilities is gravely at risk.

The Staffing Crisis By The Numbers

The following data is from a January 2022 survey conducted by They Deserve More. Sixty-seven community providers and agencies from across the state participated, representing a majority of people served.
 
2,514 Number of unfilled DSP positions at 67 Illinois provider agencies, averaging 38 unfilled positions per agency
27% DSP vacancy rate — providers reported an additional 17% of staff were unable to work for COVID-related reasons
14,000 Number of people unable to access services because of limited State funding and capacity for providers to care for them. Source: Illinois Department of Human Services, 1/18/22
54% Percentage of agencies actively planning to consolidate residential sites due to inadequate staffing
59% Percentage of agencies actively planning to suspend admissions due to inadequate staffing
27,000 children and adults with developmental disabilities who depend on services
Hundreds of Thousands parents, siblings, family members of children and adults with developmental disabilities who rely on DSPs to care for and support their loved ones